• Anonymous
      June 18, 2011 at 2:49 pm

      Some of you know me; I’ve been posting here for about a year and a half or more. When I first came, I was convinced I had CIDP, only to learn to question my own judgement after hearing from several neurologists that there was NO WAY I could have CIDP.

      Over the past two years, I’ve been diagnosed with Peripheral Neuropathy, a Cervical Radiculopathy, Degenerative Disc Disease, 8 herniated discs, Spinal Facet Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, and, most recently, Rheumatoid Arthritis. The Peripheral Neuropathy and Cervical Radiculopathy have been questioned several times, and the Cervical Radiculopathy has been pretty much thrown out.

      Having increasing symptoms within the past six months, however, I went to my pain doctor and asked if he thought it was worth having my EMG’s redone, since it had been a couple years. He thought it was prudent, and I had my Upper Limbs tested on 6/9/11, and my lower limbs tested on 6/16/11. The Upper Limb testing didn’t show much change; in fact, it showed me “borderline Peripheral Neuropathy”, with some mild slowing and nerve degeneration. With that in mind, I think the Physiatrist and I both weren’t expecting much when he did my lower limbs this past week. We were both wrong.

      I knew something was wrong during the first set of “stuns”…he gave me about 8-10 zaps, looked at me, and asked, “Can you FEEL that??”. I told him I could, kind of, but it was nothing impressive. Asked him if he’d found something, and he said, “Oh, we’re WAY to early to decide that!”.

      He continued the test, which was supposed to be a one hour test, for almost 2 1/2 hours after that. At the end, I told him that the prior testing had shown that the problems in my legs were completely sensory, with no motor involvement, and minor at that. He just looked at me and said, “Well, things have changed.”

      He went on to tell me how there is now SUBSTANTIAL motor and sensory loss in BOTH legs…nothing “iffy” or “maybe” about it, he said…it’s substantial. He said you definitely have Peripheral Neuropathy, but that he thinks I have “something else going on, as well”. He’s just not sure what. I asked about MS, since that’s been brought up again recently by other docs, and he said absolutely not, that MS is a CNS problem, and these changes are not Central Nervous System. Then I dropped my big question…told him I’d thought I had CIDP ever since the start, and how every doctor has told me I was crazy. “Could this be CIDP?”, I asked. His response was “Well, CIDP is just a variant of Peripheral Neuropathy, you know…”, which I thought was the understatement of the year. :confused: But, he wouldn’t say, “No”.

      So, it seems I might be back on this path, again. Seems like DejaVu all over again! :rolleyes:

      The results are being sent to my other doctors, and after review with them, I think I’m going to strongly push for an LP, as that would seem to be the next logical step. Especially now that I have strong validation from EMG’s.

      Thanks for listening; I’ll keep you informed as to what I find out.


    • Anonymous
      June 18, 2011 at 5:40 pm

      Elmo will you be sent back to a neurologist? I am not really familiar with what a Physiatrist is as I haven’t heard the term before. Did the Physiatrist do the EMG and nerve conduction studies? Yes a lumbar puncture sounds a good plan and perhaps bloodwork for autoimmune ie. sensory motor panel from Athena Labs. Keep us posted please.

    • Anonymous
      June 19, 2011 at 7:29 am

      Hey Laurel – a physiatrist is a specialist in physical rehabilitation. He plans for and sees that your “plan” is carried out and changed as needed for your best. My son is a third year intern a UC Davis, Sacramento, CA. He loves his work, always finding it challenging to have some understanding of what the patient is going thru. With his mom having GBS residuals for 16+ years I am a challenge to what he was taught in med school 😮

    • Anonymous
      June 19, 2011 at 1:10 pm

      Thanks Judi. You must be busting with pride over your son!

    • Anonymous
      June 19, 2011 at 2:28 pm

      Hi Elmo. I’m new here but it seem that we are in the same boat. I’ve been having symptoms for 30 years now. Was dx’d with RRMS in 2010 ,and PN (moderate sensory /mild motor neuropathy). Then Mar. this year dx’d with lupus. Now seeing I’m seeing a new neuro. who is questioning my MS dx’s (still I have a dx’s of RRMS for the time being). I’m waiting on a referral for another brain,cervical,and t-spine mri w/wo contrast ,plus EMG. Neuro is thinking either vascultis or cipd or both.

      All this back and forth ,changing their minds has to be driving you as crazy as its driving me. I’ve also been diagnosed with cervical radiculopathy,legally blind and IBD. But what really matters is that they get the diagnoses right so that we can get proper treatment. I hope you get your answers soon.


    • Anonymous
      June 23, 2011 at 1:32 pm

      I honestly think you need to push for that LP AND an MRI of your brain & spine with & w/o contrast.

      I think you may have too many cooks in the kitchen, so to speak. Forgive me for not remembering but have you gone to Mayo? I think it might benefit you.

      I hope you get some answers real soon!


    • Anonymous
      June 24, 2011 at 2:44 pm

      Hi Elmo, I’m going to Loma Linda here in California. Their doctors are really good. The Mayo clinic is about 3 hour from where ,it would be hard to get there. I’m still waiting on the Mri referral to get approved hoping that that doesn’t take to long. But as for the lp I did talk about that at my neuro appt. and she said that she is holding off on that until the mri’s and emg is done.
      I’m the meantime between the waiting and this killer heat I going nuts.


    • Anonymous
      May 5, 2011 at 8:52 am

      Hey you guys things are still going well thus far-THANK GOD.
      All the tingly feelings are gone. I am pretty much back to normal except my balance is still off at times. I am living proof that things will get better. However, no one could have told me that back then. Its a process.
      Just keep at the therapy you guys.

      Until the next update may GOD bless you & your family during this sickening time.


    • September 11, 2010 at 3:07 am

      Well sort of an update…no news about the charges or court or anything so I don’t know how that is going.
      Did get to meet my new dr. Turns out I am familiar with him from another clinic and just happened to have wanted him as my dr a year or so ago because he was so nice and helpful. He knows some about GBS, is willing to learn and work with me as we go along if I am up for that. Agreed with my treatment, we talked a lot and I was honest about some recent events.

      Remember I mentioned that I just didnt feel like myself, that things seemed to be getting worse instead of better? Well it got so bad that suicide was always in the back of my mind. Scary considering I have kids and a husband and no reason to do that. Well I dug around quite a bit earlier in the week after a blow out and hubby was trying to make me put my finger on what was wrong, to name it. Well hells bells, with all that is on my plate is wasnt an easy task. I just wanted to be left alone as usual. So I finally come across some interesting info about Singulair and adults and side effects. Up till then I had only found info about children. Apparently there are some pretty nasty and scary side effects that are caused by this particular medication. Deep depression, suicide, mood swings, aggression, etc. All of these things would be taken out at home, I was almost normal in public. I took myself off of it cold turkey! I had talked to my original dr about the possible effects not too long ago and we agreed to half my dose. Within 3 days I as hit with major allergies and chest tightness and shortness of breath. Ugh. So I went back on it. This time I am sticking it out! Yes the shortness of breath is back, the bear hugs, the stuffy nose and sandy eyes. But I dont care. I managed to run errands all over town yesterday and was tired, but perfectly fine when I got home. Normally I would have quit not even half way through and been a total you know what when I got home.
      Dr asked me a long list of questions, had no idea what it was leading up to, until the last two…I was thisclose to being put in a quiet room on suicide watch. Only thing that kept me out was not having a plan. He put me on a nose spray (non steroidal) and an inhaler…hopefully not stimulating and hopefully it will help. I told him my residuals were flared up and making life a bit miserable, then he asked if I had ever tried Prednisone treatment for that. Uh, no. And won’t. Explained that is not a treatment for GBS to the best of my knowledge and I could only imagine what a raging lunatic I would be on that!
      I do know that since going off of the Singulair, I actually feel like things matter again. The darkness is going away and I am not nearly as miserable! It takes about a week to get out of my system so we shall see what happens. It was so gradual, I mean I have been on it for about a year or so, and didn’t know what was going on. I just knew that the stress in the house, financial problems, health and life made it all seem so much worse.
      anyhow, doctor is a nice person, and I think this will be okay. He seems open to letting me talk and tell him what I have learned and what I have been through. What I hope to accomplish and my fears.

      Had a fun morning with my cats and my camera and the sunlight coming thru the front window. I wasn’t feeling too well, and just wanted to lay on the couch and veg. But the light was so pretty and the cats were wanting attention. I was only able to really get shots of a couple of them. But I love how they turned out. If all goes well tomorrow, I am planning on taking my daughter somewhere special. It will be my mothers birthday and I don’t want to spend it at home brooding over what is gone. I want to celebrate life. Will be sure and take the camera and have fun. Hope I can make the walk and the drive….lots of neat places to sit awhile there so I can always rest along the way. And LOTS to take photos of!

      Okay thank you again for all your support. I sure hope I am on the mental mend now.


    • Anonymous
      September 11, 2010 at 11:46 am

      You have been through so much, & have so much on your plate! So sorry about the side effects of the med. & the depression. The depression, I’m sure glad you found the problem! I’ve been praying for you every day & will continue to lift you up in prayer every day. Thanks for the update, please keep us posted.

    • September 12, 2010 at 3:08 pm

      thank you so much Smitty! Your prayers must be working, because I was able to find an answer I had been searching for for over a year.

      Big hugs!! and return prayers as well!

    • Anonymous
      September 18, 2010 at 5:50 pm

      You’re welcome Lori! Thank you for your prayers too!
      Hugs, smitty

    • Anonymous
      September 18, 2010 at 10:33 pm

      Lori I hope things continue to improve–now that you are off the Singulair. You sure have had a rough time. I just said a prayer for you. Lots of good thoughts being sent your way too.

    • Anonymous
      September 18, 2010 at 10:42 pm

      I have gone to Fairly Odd Mother’s website and her inspired photos are indeed stunning. Please treat yourself to a visit and see what she can do with a simple photograph and her talent ”’

      FOM-you have been thru a lot. Amazing that prescribed medications can cause horrid unsuspecting side effects.Give the kitties a head rub for me.


    • Anonymous
      July 23, 2009 at 8:30 am

      I thought I’d give an update.

      We go to the nuero next Thurs for Connor. Finally.
      We are still going to PT every week and doing stuf at home and actually I do seem some improvement. He does still very much walk on his toes but he can be cued easily to walk heel to toe. He’s not falling as much either. I can only pray this isnt nuerological …it just cant be.

      We went on our camping trip to the Niobrara. It poured rain the morning we were to get on the river…I mean massive rain. By the time it was time to get on, the rain had stopped and soon the sun came out. We tubed for about 5 hours. We also stopped and Connor and my husband played in Smith Falls…
      I did pretty good overall. I was surprised. Listening to my husband cuss when putting up the tent tho…I felt bad and wished I could help. I guess as usual, I was just in his way.

      I hope that next time we can stay more than overnight. Connor really had fun.

      I switched home health companies and wrote an email to the owner of the one I’m leaving. She actually called me and couldnt apologize enough. She didnt know all the details of the new nurse. I filled her in.

      I hope I’ll be happy with the new company…I have a feeling I will.

      I’ve been having a new issue of pain in both legs all the way to the groin. Used to be just to the knees. I have to wrap the heating pad around one leg and then hold them together. The other night it hurt so bad but by morning, it was gone.

      Tomorrow I am taking Connor to the waterslide park that we went to last year. I dont know if I’ll make it up all those stairs this year…but, you know me, I’ll try.

      have a great weekend everyone….


    • Anonymous
      July 23, 2009 at 9:57 am


      I am praying for you and your son. Its not easy dealing with issues when its your children.

      I would gladly take Ryan’s illness and bear that cross for him but I can’t. Oh how I wish I could…

      take care and God Bless


    • Anonymous
      July 23, 2009 at 11:26 pm


      Good luck with your appointment. I guess it was today? or next week?

      waterslides sound fun !! Hard climb up, fast ride down.

      Why don’t you go up ONCE, and let him go up the rest of the times himself. It will make him feel grown up and in charge!! No need to explain, just tell him he can do it.

      I am glad you are getting to do these things while you still can. I wish I did. I worked, worked, worked, and then I couldn’t work or do a lot of other things with the kids. I have always felt bad about that.

      Now I can no longer drive and have to depend on my son (18) at home to drive me around. He is pretty good about it, but I am sure he would rather not have to do it. I hate having to ask. But CIDP changes things.

      Take care and have fun this summer.

      PS, Guys always fuss when they are putting up tents !!

    • Anonymous
      July 25, 2009 at 5:45 pm

      We went to the waterpark all day yesterday and the pool today. Boy am I sunned out. I never thought I’d say that.

      I made it up the stairs for the slide once. My legs felt like jelly by the time I got up there. It was really tough but I didnt let anyone know I was struggling.

      The worst part for me really was the wave pool. I mean I cannot stand in that water as it’s waving. I got on the tube a few times and made my way out only to get washed back to the “shore”. I wasnt able to control it and I had to just slosh around until the waves stopped. They go ten minutes on and ten minutes off. Another time, I had Connor on my lap and we went out deep so that we wouldnt wash ashore. It wasnt much fun for me to be there b/c it’s so hard to do much of it.
      My feet felt like they were walking on broken glass so I had to wear my shoes unless I was in the water. I actually found some knock off brand crocs that I can wear for things like this…for short periods of time.

      I know that Connor had fun and my neices were there, too and my great niece is near his age so they ventured around together. I guess I just have to have my fun thru Connor.

      I dont have an appt for ivig till early August. Connor goes to the ped neuro on Thursday to try to find out why there are no reflexes. I still pray every day. I have a long list of prayers these days.
      I’m hopeful that things are going to be just fine for my little boy.

      Dick, I didnt realize you dont drive anymore. Is that b/c you cant feel your feet ? I worry about that but so far I can judge what’s happening. So strange..I cant feel them but I can. They are numb but they are painful. Most of the time now it’s like I’m walking on broken glass. It hurts so bad.

      I dont know what’s going to happen. I tried to book another trip in March when Connor is on Spring Break. We’d be going back to the beach. My husband didnt jump on my idea but my thoughts are that I know someday I may not walk on a beach…without alot of help. I want to build good memories for my son and I want to do what I can before I cant.
      Maybe he doesnt realize. I know he doesnt really know what I feel about it anyway. I did try to tell him.

      I’m gonna get ready to go to the movies now. Was hoping for a family night but, as usual, looks like it will just be me and my son. I’m used to it.
      We’re gonna see G Force. I want to go to Hangover. Maybe I’ll do that next Friday..even if by myself.

      I hope everyone is well.



    • Anonymous
      April 8, 2009 at 9:43 pm

      I went to my neuro ans asked for more ivig… he noticed measurable loss with the decreased dose, and agreed with me that an increase would be good.

      We talk abt a loading dose and then decreasing to where I was doing well, at (3) 40gm doses per month, but then we settled on trying (3) 45 gm doses this month and seeing how it goes. Trying to keep the insurance company from asking for more tesing if we went back to a loading dose.

      Also was able to get a third dose last month at 40 gm, which has decreased my right eye involuntary movment ans helped with more movement coordination, though I think I may have spent it all with falling last week and fracturing my hand/thumb.

      The past two days I have been very tired, and last night and today had some siezures. I have increased my siezure meds until this settles, and I have an infusion tomorrow.

      Also my enuro gave me his cell number to text him if things get worse, as I called his office a couple of months ago when things started to deteriorate, and was told I’d have a reply in a day or two…never got one. He never got the message that I called.

      So, good stuff! thanks to all of you who encouraged me to speak up.

    • Anonymous
      April 9, 2009 at 8:36 pm

      Congratulations on taking good care of yourself. Hope you continue to get better.

    • Anonymous
      April 10, 2009 at 11:32 am

      BUT? Start keeping a short-hand type of list…noting the results…The neuro can use this to justify the need for more IVIG and that improvement is noted while on it.
      Deal with two lists? One of the good things, one of the not so good. Both can be used with prudence by your docs…. Also, notes on the eye movement? such as…tho I hope not.. when it comes back and how it comes back [slowly? With a vengeance?] you get the drift. The shorter and simpler such a list is – the better.
      Your neuro is at least responsive? In that you can text him. One time I’d called twice daily for a week to get a response to something that could have been critical.
      Hoping your infusion is just what you needed!

    • Anonymous
      April 10, 2009 at 11:56 am

      I have been having more seizure activity this week, I think a large part off it is the fall I took last week, busting my thumb.

      I usually treat seizure symptom with lyrica and ativan. I’m in a pickle now as my copay for q month of lyrica is $290. I called psizer yesterday and the sqid I didn’t qualify fo aid. $290 is a months worth of groceries in this economy.

      Not really sure what to do. I took low dose neurontin a few yrs ago and it reaaly wiped me out,

      Gotta contact neuro again, see what he says
      thiss sucks, hopefully things will get better as I get used to the 45 gm octigam

      thqnks for listening,

    • Anonymous
      April 18, 2009 at 9:41 am


      Lyrica and Neurontin are in the same class. They changed Neurontin makeup a little bit to re-market it as lyrica because the patent ran out. It is generic and can save you a bundle.

      Being the same thing, the “wiped out” feeling you had should go away as you get adjusted to the dosage. I went through the same pricing problems and $$$ issues two years ago. No problems here. I take 2400 a day, have a generic copay, and am feeling much better all around.

      I am not telling you what to do, or what to take, just sharing my solution to a similar problem. Please look at all your options before deciding. My issue was neuropathic, a seizure Rx is different.

      Good luck,

      Dick S

    • Anonymous
      April 18, 2009 at 8:13 pm

      hi Dick,
      Thanks for your thoughts.. I spoke with my nuero abt switching to nurontin.. but I had taken it before and it really doped me up at 50-100 mg so we decided that it’s not a good option for me. I do well with lyrica and it does help to keep seizure aruas at bay as well as help with neuopathic pain. I guess I’ll have to stick with it! I did get an application from psizer for payment assistance, so maybe they will decide in my favor.


    • Anonymous
      March 5, 2009 at 2:22 pm

      Well it’s been roughly a month and a half since our daughter came home and I will say she has been making some incredible strides.When she came home she had her wheelchair and her walker to get around with the help of her AFO’s and now she is walking with only a cane and has since had her AFO’s hinged to allow more movement with her ankle’s.She is caught up in school and is even three chapters ahead in science,so all is going well.

      Once she gets approved she will be posting soon.I know this may sound redudnant but again thank-you to everyone who has helped and answered questions for us.


    • Anonymous
      January 4, 2009 at 1:29 am

      😀 Hay all good new’s wife got job and finally got court date for disability after 3yrs god is good thank’s all I’m praying for all of you jim:D

    • Anonymous
      January 4, 2009 at 7:57 am

      I’m happy for you with your good news, what a relief it must give you.
      Good luck with your disability .

    • Anonymous
      January 4, 2009 at 11:15 pm

      hey jim,
      great news..keep us posted and good luck..tell wifey to enjoy the job.

    • Anonymous
      January 5, 2009 at 5:14 am

      thank’s an yes it is relif just scared to go all the way to indy cause of the pain. BUT god is GREAT this is going to be grat year:D

    • Anonymous
      January 5, 2009 at 5:15 am

      A Great Year Sorry Spelling:d

    • Anonymous
      January 9, 2009 at 7:31 pm

      Hi Jim,

      It’s great to hear wonderful news!! Congrats to your wife on her new job and congrats to you for finally receiving a court date.

      We’ll pray for a favorable outcome!!

      Take care,


    • Anonymous
      January 10, 2009 at 6:49 am

      Hi Jim! I hope all goes well for you and your wife. Hope you get that disability. Will keep you in my prayers. May 2009 be a much better year for us all.
      Linda H


    • Anonymous
      November 18, 2008 at 3:34 pm

      I finally have a diagnosis. Unfortunatley, I have ALS. My husband I have alot to do and to think about. I wanted to say a HUGE thank you to all of you.
      We are going down another road, one day at a time.

      Keep smiling, tell the ones that are close to you “i love you”(you never know) 🙂


    • November 18, 2008 at 5:02 pm


      I am so sorry to hear of your diagnosis. I wish I could hug you right now. You are in my prayers and thoughts. Please try and stop by to say hi here even if you seek another support forum.


    • November 18, 2008 at 5:21 pm

      Thank you for sharing your dx. Kevin and I will pray that you are able to be as strong as possible on this journey.
      Dawn Kevies mom

    • Anonymous
      November 19, 2008 at 9:43 am

      thank you for letting us know your dx. My thoughts are with you.

      Even though I don’t know you, I’ve been reading your posts and I feel for you. wish I could give you a big hug.

    • Anonymous
      November 19, 2008 at 11:40 am

      Know that you and your family will be in my prayers.

    • Anonymous
      November 25, 2008 at 6:43 am

      I Just Prayed For You Before I Wrote This .i Dont Know What To Say To Make You Feel Better But I Will Pray For Your Complete Healing And Hope For The Best And The Best Is Doc Is Wrong.so Let God Take The Wheel Cause Hes Only One Who Can Pull Any Of Us Threw This.good Luck Remember Jesus Saves.jim In Indiana.

    • Anonymous
      November 25, 2008 at 7:19 am

      A few weeks ago, I Goggled Stephen Hawking because I had heard a quote about how much he appreciated life. He is probably the most famous person living with ALS. He has been living with it for about 45 years and still is working and enjoying life–with a lot of assistance, but, nevertheless, inspirational. Search out his official website on the web and read what he says about his illness. It will inspire you as it would any of us with neurologic illnesses and limitations in abilities. I pray for peace and that you also find a way to continue in life despite this diagnosis to appreciate each day and each person.

    • Anonymous
      November 26, 2008 at 6:34 am

      Oh dear Micheline! I am so so sorry to hear your news. I will keep you in my prayers and do hope that their is some kind of new treatments that will help you get through this. But my deepest prayers will go out to you and pleased keep us posted on how you are doing. You are family here and we all care! Sending you some Cyber Flowers and several Hugs.
      Linda H


    • Anonymous
      October 30, 2008 at 2:27 pm

      I jsut wanted to update everybody on how i am doing….I say my nero on Oct 16/08 and he told me i have reoccuring/relapsing CIDP…but doing great on the treatment…so he stoped the IVIGs and is weaning me off the predozone. I have been weaning off the predzone since August and doing great and this will be my first time in November not geting the IVIG Treatments. (I was getting 660ml @ 200/hr every four weeks, the 200/hr was just at the end I dont recall what the starting was per day). I have also started to go for weekly messagages, which i may cut back to every two weeks. I do love the messages though 🙂 I also started back at tap dancing…I am loving that but I jsut have to be careful with my feet since those muscles are strong enough just yet but Im tring. I was wondering if anyone had reflexology dont on them before? The reason I am asking is that a friend of mine is just going through to get her certificate and is willing to try it on my feet and I just want to see if it is worth it. I think that is all that I have to say for now.

    • Anonymous
      October 30, 2008 at 5:22 pm

      I had reflexology many times on my feet! LOVED IT 😀

      Unfortunately I found out that I have blocked arteries in my heart, my reflexologist won’t touch me. I guess it can affect the heart and arteries.


    • Anonymous
      November 7, 2008 at 9:38 am

      This week hasnt been good for me…I have been experienceing some weirdness in my legs and the rest of my body….For starters I noticed that my one leg balance is going but it was there before ..I cant stand on one foot with out the feeling of falling over its unsteady…and yesterday I couldnt tap with out my quads gettn tired and they havent done that before..they have but not just doing one lenght of the room…also my mid section has been gettn tingling feeling but it goes away…I was wondering if this is normal per say on getting off the drugs and my body is reacting to it this way? Any help would be appreicated.

    • Anonymous
      November 7, 2008 at 9:45 am

      If you have CIDP then you will need to stay on treatment. You need an immuno modulator on a regular basis.

      Call you neuro ASAP. The longer you wait the more your body is being attacked by the bad anti-bodies & the worse you will get. The worse you get the harder it will be to gain back what is lost.

      If you are going to do IVIG treatments then you need a loading dose. Then you need to figure out what kind of maintenance you need. But when you have CIDP you can’t just stop the meds because you are doing better.

      Good luck,

    • Anonymous
      November 9, 2008 at 8:34 pm

      it was my doctors deciding to stop the IVIG’s…since i was doing so well…i did agree with him…but i do know i need to get off the predozone…I did get a hold of my nero and the earliest that he can see me is Nov 20 and he wants to do anther emg to see what blockages i do have or its just redusials that i am feeling and that i just over did it lately…we will see what happens in the next two weeks i hope nothing really to drastikly will happen…Thanks for listening

    • Anonymous
      November 10, 2008 at 6:06 am

      Hi Linda! I am glad to see that you were getting better but sad that you may be getting problems again. Maybe you were over pushing yourself with the tap dancing and it caused another flare up! I hope it was just that and that you end up feeling better soon! Hope your neuro does have the answer and gets help soon! Hugs
      Linda H

    • Anonymous
      January 14, 2009 at 1:21 pm

      Sorry I took so long to update on my last Dr’s Appointment…Well on Nov 20/08 he did a strength test and also an emg test…everything is normal…he thinks why I was having problems is because my body was tring to get use to the predozone leaving my body…So he lengthened my weaning off process from going down by one every two weeks to going down by one every four weeks and it seems that my body likes that way better. I havnt had any trouble doing that except for the fatigue that still have and some akes and pains…but other than that I am happy to be somewhat healthy.


    • January 14, 2009 at 5:58 pm

      Hi Lindsay,
      Glad things are going well for you. Try to keep a close eye on things just in case. Maybe once a week do the routine neuro assesment stuff so you can guage yourself. The walk on the heel is always a good test for us. Praying things keep going well for you,
      Dawn Kevies mom

    • Anonymous
      January 14, 2009 at 10:24 pm


      Would you go into a little more detail on what you do to self assess.




    • Anonymous
      September 25, 2008 at 7:40 pm

      Well after my visit with my original Neurologist with a possible GBS-CDIP diagnose. We asked for a second opinion. I was referred to a Neuromuscular Neurologist, great lady. She preformed another EMG & NCV and physical exam. Which resulted in “No for GBS-CDIP””I have a rare case” and referred to her colleague for another EMG and muscle biopsy.
      Another Neuromuscular Neurologist, another great lady. She did rule out GBS. She actually was able to see the difficulty I has having in moving, standing, and trying very hard to walk. She talked to both my husband and I. She was very easy to talk to. 🙂
      I asked her what it could be, and my husband said “the not knowing is the hardest”. She said “it maybe a variant of Lou Gehrig’s” I held my composure. It really didn’t hit me until we were going home.

      She did how ever is concerned for my foot drop, and will be contacting my GP, as well as for OT & PT.
      It will be about 2 weeks for my biopsy to come back, she wants to do another MRI, and may want to do another LP. I am fine with it; hopefully she is wrong like everyone else has been.

      The following day my husband informs me that she is an ALS specialist. I lost it. Well that is it for now. 1 more week to go!!

      I forgot, the IVIG didn’t work. 🙁


    • September 25, 2008 at 8:51 pm

      My prayers are with you, to day and everyday. Be strong, as strong as you can.
      Dawn Kevies mom

    • Anonymous
      September 25, 2008 at 9:52 pm

      Micheline, Hang in there, best wishes and prayers being sent your way.

    • Anonymous
      September 26, 2008 at 12:11 am

      do you know what your protein level was from your lumbar puncture/spinal tap. If it was elevated then that is a sure sign of GBS and it could still be GBS without having an elevated protein level. Keep pushing until you get a definite diagnosis. YOu will be in our prayers.


    • Anonymous
      April 9, 2008 at 3:08 pm

      I was diagnosed with CIDP in August of 07. In October, we started with double treatments of ivig over 2 days, then a 4 hour treatment for the next 3 months. There was no improvement – in fact, symptoms seemed worse. So, at that time my doc said let’s see if Prednisone will help. So, we started on 70 mgs a day on January 22, 2008. The next appointment with the neuro showed no improvement and again, symptoms appeared worse (gait, etc). So, at that time (March 8, 2008 he upped Prednisone to 100 mgs a day.. to date (4-9-08) no improvement.. next appointment is on the 18th .. from what I’ve been reading on here it seems some folks have had good luck with PE ??

      So, pretty much using a cane to get around and lately noticed dragging my feet occasionally.. stairs are harder and harder to go up, thank God for spell check as typing is getting harder.

      Oh, I also am trying Benfotiamine, which is a lipid-soluble form of thiamine (vitamin B-1).

      Any suggestions / comments ?

    • Anonymous
      April 9, 2008 at 3:40 pm

      I had no results with IVIG which was started in Nov 2007 and ended in March 2008 when they switched me to Plasmaphresis.
      Had the fifth treatment of phresis last week and have noticed some improvement. I’m now on hold for phresis until i start relapsing and then md will re-order it.
      I was also started on Prednisone 80 mg a day in Nov 2007 and just started to reduced the dose to 60 mg aday alternate with 40 mg a day. MD contines to state I have to remain on Prednsione, he will get me to the lowest dose possible.
      I started Cellcept 2000 mg aday in Nov 2007
      My husband had to build new stairs to get me in the house. Much lower and wider steps for the walker to fit on. My feet will not lift up very far. Am weak and was falling a lot.
      I’m dependent on a four wheeled walker with a seat.
      Today was told I’m not severe enough yet to qualify for an electric chair under Medi-Care laws.
      Good Luck to you and hope they find an effective treatment soon.

    • Anonymous
      April 9, 2008 at 4:38 pm

      Hi Kenneth,

      I’m not sure if I’m clear how much IVIG you are getting. But I know some of us, myself included, get it more frequently than once a month. I started monthly and it just didn’t hold and am now on an every other week (two days in a row of 40 Gms each day) and I get Solumedrol. I also started Cellcept last month. I feel great this week. This is about the best I have felt in a long time. I am not perfect by any means, but my gait is better, my energy level is up, my typing is better, etc. I wonder if maybe you need it a little more frequent? If not, PP may be an option for you and other’s that didn’t respond to IVIG. Good luck to you….. And Beth I’m glad you are seeing some improvement as well.

    • Anonymous
      April 9, 2008 at 5:30 pm

      Beth, Thanks for the info and I’m glad to hear that you are seeing improvement with the PE….. That’s encouraging to say the least. Good luck and hopefully there won’t be a relapse, but you’ll continue to improve.

    • Anonymous
      April 9, 2008 at 5:35 pm

      The first two days is was an infusion that lasted almost 4 hours for each bag.. then after that, it was just one bag over 4 hours and that was on a monthly basis. So, after 3 months he scrapped the idea of ivig and switched to just the Prednisone.

      As for your improvement – that’s also good news …

      Well, my next appointment is just around the corner – so hopefully a better plan will come up.

    • Anonymous
      April 9, 2008 at 7:47 pm

      We need to know how much IVIG you are getting – in grams. We can’t tell how much it is by the length of time the infusion lasts. The time varies by person & not by amount. For example, my daughter (6 yrs old) gets 20 grams & her infusion lasts 2 hours 45 minutes, but she goes at a faster rate than others.

      The average dose of IVIG is prescribed at 2 grams per kilogram for the loading dose, which is usually given over 4-5 days. Meaning every day you get the same amount for 4-5 days. Then the average maintenance dose is 1 gram per kilogram.

      We’ve found that 2 grams per kilogram hold Emily better than just 1 gram for a maintenance dose, so that’s what she gets. Apparently more dr’s are coming on board with accepting that as a reasonable dose as well.

      Treating CIDP is an art form. It takes A LOT of tweaking & waiting & watching.

      You should talk to your dr about how much IVIG you received at every infusion & see if the dosage can be changed & see if you can get it more frequently. The full-life (meaning how long IVIG stays in the body) is about 42 days, so half-life is about 20-21 days. Some people need to start off getting infusions every 2-3 weeks (or sooner) before the IVIG starts losing it’s potency to see any real improvement.

      I’m not a fan of Prednisone, so I’m just not going to comment on that, LOL. The only advice I’ll give on that is that if you haven’t seen any improvements while on it, then it’s not working for you either & you should be weaned off. No sense in putting your body through that if it’s not doing anything for ya.

      As far as other treatments, some people do have success with plasmapheresis. Others go on to Cellcept, Imuran and Methotrexate with or without IVIG.

      Good luck,

    • Anonymous
      April 9, 2008 at 10:06 pm

      Thanks Kelly for clarifying the amount needed ongoing….

    • Anonymous
      April 10, 2008 at 12:05 am

      I was just wondering if your neuro has ever said what type of CIDP that you have. There are two kinds of CIDP: the relapsing/remitting, which tends to respond well to IVIG & Plasma Exchange, or the progressive, which tends to come on at a slower pace, but tends to be less responsive to IVIG or PE period.
      I have the progressive form & was told that very early on when neither treatment did anything for me. About steroids (this includes solumedrol also), if they don’t work almost immediately, they probably won’t work at all. 100 mg daily seems to me to be an extremely large dosage, & if it isn’t doing anything for you, I would get off of them ASAP, as they can do a lot of damage, often more quickly than one realizes.

    • Anonymous
      April 10, 2008 at 2:58 pm

      Thanks for the heads up – I wasn’t aware of the two types and will bring that up ion the 18th when I see him. As this seems to be getting progressively worse, I am going to assume that it’s the progressive type for right now.

      As for the Prednisone, I agree – it does have it’s side effects (full face, swollen feet and ankles, cuts taking forever to heal, etc.)


    • Anonymous
      March 3, 2008 at 6:55 pm

      Hi everyone. I saw my neurologist last Thursday. He is continuing my Prednisone taper down from 30 mg to 20 – reducing it by 1 milligram every 5 days. At this rate, I will still be on this stuff a year from now. Actually, his goal is to get me down to 5 mgs per day and then maybe stay there. He says many people are never able to come off the pred completely. I think our bodies become dependent on it . He also wants me to continue with the monthly IVIG for now, and has added Imuran as well. I was pretty disturbed that he was adding another medication, especially one that has risky side effects (I know they all do, some more than others). I have been doing well, but I am not 100% – still have some weakness and some numbness. He said he was looking at where I would be in 6-12 months from now, and feels that many people need a combination of treatments. He wants to eventually be able to space out the IVIG treatments. Me, I am all for spacing them out since they are so expensive, even after my insurance, but I hate to have to take meds that have risky side effects instead.

      Is anyone else out there on low dose pred, Imuran, and IVIG, and if so, how are you responding? It is not that I even mind taking the Imuran so much, just taking it NOW, before I really have even had time to see how I am going to tolerate the IVIG. Any thoughts are welcome. Thanks so much.

    • Anonymous
      March 4, 2008 at 1:28 am

      [COLOR=black]Hello Deem,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]I also am doing a combination therapy. In my case, it is plasmapheresis, prednisone (but not a low dose), and azathioprine. I am not wild about any of these therapies, but without them, I know from experience that I would be a quadriplegic. Given that choice, I’ll deal with the future consequences when they come. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Usually, when immunosuppressants are prescribed in conjunction with prednisone, it is with the idea that one will need less prednisone for the same result. One reason your neurologist might have started you on azathioprine now is that it takes 8 to 12 months to start to have much effect. In other words, you will have figured out how well you tolerate IVIg and what schedule you are likely to need before the azathioprine really has much effect on your immune system.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]As you have noticed, changing the prednisone dose and gauging its effects is a long process. I am 8 months into my current regimen and we are still adjusting the parameters. I hope to have the parameters dialed in by the end of the year, but I would be surprised it happens much before then. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]As to the side effects, all you can do is be vigilant about them. For prednisone, have your neurologist prescribe famatodine (Pepcid), to prevent excess stomach acid production, and Fosamax, to help prevent osteoporosis. If you have risk factors for diabetes, have your neurologist prescribe a blood glucose monitor. Use a blood pressure monitor. Have a bone density scan every now and then. For azathioprine, stay out of the sun and be vigilant about checking for changes in your skin. [Skin cancer is the most common cancer that azathioprine causes.] If a particular type of cancer is common in your family, make sure you watch for it.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Godspeed in getting your doses and schedules dialed in.[/COLOR]
      [SIZE=3][FONT=Times New Roman] [/FONT][/SIZE]

    • Anonymous
      March 4, 2008 at 8:08 pm

      Hi Deem,
      Just a cautionary note with the Imuran. My husband started Imuran in Dec.2007, and had a bad reaction within about 12-13 days of starting it. He began to experience chills in his back on day 10 with no fever, on days 11 and 12 he complained again of the chills in his back and no elevated fever as we kept checking it. On day 13 he began spiking a temperature and by the time we got to the hospital it was 104 and they said he had sepsis. He was in hospital for 4 or 5 days treated with antibiotics. His blood work was quite wonky with elevated liver enzymes, low hematacrit, and low red blood cells. It appears that the Imuran began causing some bone marrow problems. It took him nearly two months to recover from the 2 weeks of Imuran. It seems that most people tolerate Imuran quite well, but there are those like my husband that do not. Pay careful attention if you start to get an elevated temperature and if you do go to the hospital and explain that you are on an immunosuppressant. When we went to the emergency they whipped my husband in so fast his head spun when he explained that he was on Imuran and they found his temp to be 104.

    • Anonymous
      March 5, 2008 at 6:19 pm

      Hello, thanks for the advice guys. Mark, I understand what you are saying – about it taking a long time to see if the Imuran will work. When he mentioned it before, I had figured he would prescribe it if I didn’t respond to prednisone and IVIG. I do understand that I will be tapering down to a lower dose of prednisone and the Imuran may be the key to allow that to happen. I had hoped that I would be one of those who would need IVIG and nothing else. He said in his experience many people need a combination therapy. I guess I fit the profile of those folks. My disease was pretty aggressive. Maybe it is not worth risking a relapse?

      Laurel, he wants me to have blood work every 2 weeks to monitor things. I am sorry your hubby had a reaction. What is his treatment plan now? Is he improving?

    • Anonymous
      March 5, 2008 at 6:49 pm

      [QUOTE=deem]Hello, thanks for the advice guys. Mark, I understand what you are saying – about it taking a long time to see if the Imuran will work. When he mentioned it before, I had figured he would prescribe it if I didn’t respond to prednisone and IVIG. I do understand that I will be tapering down to a lower dose of prednisone and the Imuran may be the key to allow that to happen. I had hoped that I would be one of those who would need IVIG and nothing else. He said in his experience many people need a combination therapy. I guess I fit the profile of those folks. My disease was pretty aggressive. Maybe it is not worth risking a relapse?

      Laurel, he wants me to have blood work every 2 weeks to monitor things. I am sorry your hubby had a reaction. What is his treatment plan now? Is he improving?[/QUOTE]
      Hi Deem,
      He is only on IVIG monthly right now. He gets 1 Gram per kilo of his weight monthly. The neurologist wants him on Cellcept starting in April. Our game plan is to refuse the Cellcept because of similar side effects as the Imuran, and not enough long term studies on the efficacy of either of those drugs. She is trying to decrease the IVIG due to its cost. So if pushed against the wall, my husband will agree to pulse steroids. He seems to be improving with just the IVIG thus far. There is at least 50 years of steroids being used and the side effects are all well recognized and reported. It is our belief that the use of Imuran and Cellcept haven’t had enough clinical trials for us to feel comfortable with going that route. My husband says he can understand organ transplant recipients taking those drugs as it means staying alive for them, but with his CIDP and his experience with Imuran he feels the treatment is potentially worse than the disease. His experience with Imuran was very bad. And that has coloured our views on Imuran and Cellcept. But from all my reading, it seems that Imuran and Cellcept only work in about 20% of the people taking it so that seems low success for such high risk.

    • Anonymous
      March 6, 2008 at 2:03 am

      Hi Deem,
      I forgot to say that my husband has improved from the time he was diagnosed in July 2007. This has been on IVIG alone. He was only on Imuran for the two weeks in December. After his high temp. etc. in December he deteriorated back to square one almost. He has an atrophied right hand, and prior to IVIG he could not hold a cup or eating utensils. After starting IVIG in September 2007, within one week he could hold a cup and use utensils–but the atrophy is going to be permanent likely. He also had foot drop of the right foot prior to the IVIG. After the incident with Imuran, he lost the gains he had made very abruptly when he spiked the fever. It took two sessions of IVIG to get back to where he was prior to taking the Imuran. In April he will have his EMG and nerve conduction tests repeated, and if he hasn’t made considerable improvement that is measureable then the neurologist will be pushing him to add another drug to his regime. He refused to take Prednisone due to the side effects and that was when he was put on Imuran. He says Prednisone looks good to him now .

    • Anonymous
      March 6, 2008 at 4:19 am

      Hi Deem,
      yeah i know it seems a bit of a bugger needing all the combination treatments etc, bet we’d all love to be in the category i guess of just needing igiv. I am also on combination therapy, ivig twice a week, pulsed methlypred 500mg iv once a week and azathiaprine 50mg twice daily. I was struck down with quick onset Cidp, and diagnoised almost straight way june 07. unfortunately i experienced life as a quadraplegic also, as the ivig, and then ivig plus oral pred didnt hold me. It is very scary losing all control, and watching the paralysis setting in by the hour! I started the large dose iv pred and azathiaprine at the same time as well as another full loading round of ivig (over 5 days) and the progress seemed very slow but it did happen and around week 6 really started making some decent progress. Have been on the above 3 combination for 5 months, would love to reduce off things, we tried reducing ivig to once a week but again the weakness started to take hold, am now week 4 on being back on twice weekly ivig and am making good progress!! Am keen to here how you get on, as for the side effects if your bloods are being monitored and you are sensible with sun etc as MarkEns says you cant dwell on it too much. My Liver functions were high for first 6 weeks but have settled back to within normal again now. You are probably well aware of your own body signals by now so no mucking around if you feel like you’re getting the flu etc. Get in to your doc straight away.
      All the best and heres to you starting to feel some good effects of all those drugs.!!!!!

    • Anonymous
      March 13, 2008 at 7:53 pm

      Kiwichick – so you are tolerating the Imuran okay? I’ve been on 50 mg for two weeks and will bump up to 100 mg in a couple days. I just had my 3rd IVIG treatment today and am tolerating it really well – just seem to feel really exhausted. My prednisone is slowly being tapered down and I’m at 26 mg a day now. I am doing well compared to how I was before my treatment started, and although I thought I was really bad off, I experienced nothing like what you described, that is beyond scary. My heart goes out to those who have been there with this.

      How is your mobility now?

    • Anonymous
      March 13, 2008 at 10:30 pm

      Funny you should ask as am just home from a session at the gym!. have thrown in physio as just so badly want to get back to normal etc. (was doing regular triathlons before this hit me).
      Mobility now is pretty great really, am not back to normal, reakon roughly about 85% now. am totally independant with walking, can run a very small block, and can bike ride 10 mins on interval training at the gym (on no resistance level tho.) but have only been back at gym for 4 sessions. have very high hopes, am planning on skiing in 6 mths so that is the aim at the gym, to get legs reliable and strong etc. at present am still having to be cautious going down lots of steps etc, or on uneven ground, am not up to the speed of my children but i can manage most things myself just a wee bit slower than the kids, thats all.
      Re Imuran, i havent had any noticeable effects yet other than high liver function which has now resolved (took about 3 mths to settle).
      Glad things ticking along in right direction for you. Keep us posted.

    • Anonymous
      March 16, 2008 at 3:07 pm

      I’m on monthly IVIG. Prednisone 60 alternate with 50 mg daily, CellCept 2000mg daily and Arava 20 mg daily.
      So far, none have improved me and they are talking about adding plamaphresis to the mix.
      Hope they meds work for you soon.


    • Anonymous
      February 10, 2008 at 4:16 pm

      Sorry to have been so long away from you guys. I got 2 pancreatitis attacks and was stuck in bed. The good news though is I’m better from that and I have worked hard and am now able to get in and out of bed on my own with the use of the sliding board. Also I have got the use of my hands mostly back still have a little problems but nothing like they were. Though while I had pancreatitis they decided to test me for polystic ovarie syndrome and it seems I have it which sucks because know I have to go on a heart healthy/diabetic diet. Which basically takes all foods out of my diet. That sucks and it explains alot about different things I have been having go on with my body that every one has over looked for years but it sure is a damper. I deal with it like everything else in my life though just keep on trucking because you can’t get hung up over small things like these.

      I still have to go to a nursing home but I am hoping that with hard work mabye I can change that.

      Hope you all are doing ok


    • February 10, 2008 at 4:39 pm

      Hi Sonja!

      Glad to hear things are getting a little better. Keep up the positive attitude!
      Dawn Kevies mom

    • Anonymous
      March 7, 2008 at 3:14 pm

      The doctor just told me that if I had gotten physio therapy right when I first got guillain barre syndrome 4 years ago I would not be like this today and that physiotherapy is not going to help me and that it all up to me whether or not I get function back to my legs or not. The idiots didn’t do physio when I first got it because they thought the stroke patients and othe acute care patients were more important. What a bummer I don’t really understand what he means it is all up to me. I want to walk and have been asking for help with my legs but all they say to do is visualization and I have but it’s not working so far and it just gets me frustrated. If he is not going to get physiotherapy to work with me what chances do I have in getting better.

      I have questions though for those out there. Some nurses are starting to say that GBS is now starting to be linked with eating chicken that wasn’t fully cooked and also diet pops. Have anyone else heard about this as possible causes for GBS. Just wanting to know. They said the diet pops cause was in a study and the chicken connection they heard through a workshop on disease control. It could be possible about the chicken because I definatly had chicken before GBS whether it was fully cooked or not I don’t know.

      Well hope you are all doing well take care


    • March 7, 2008 at 6:49 pm

      Hi Sonja,
      I did read many times about the link to chicken (undercooked) It is related to the bacteria from the raw chicken. I have never heard of diet pop!
      Regarding PT, I would not worry to much on what has already happened, I kind of question what the doc said as well, you know the saying here, rest rest rest. Most on the sight usually tell new comers to back off on the pt. In any event, best wishes for good days ahead.

    • Anonymous
      March 7, 2008 at 8:25 pm

      Hi Sonja, learned something from you today 🙂 I didn’t know what physiotherapy was, googled it and found …. The terms physical therapy and physiotherapy are synonymous.
      Stay positive and best wishes!

    • Anonymous
      March 17, 2008 at 1:41 pm

      My neuro warned me about sodas in general, especially the dark colored ones. The effects can mimic MS – so similar to us.

      This neuro also told me there was a psychological component to my residuals. I relate this to your doc telling you it is up to you. We do have to make a choice and act upon it to get a little better. I think no matter what, we are going to feel the residuals a lot, but I suppose it can get better.

      One thing I know has helped me in the past few months is adding a strong multi vitamin to my diet – we really need extra vitamin Bs.

      Big hugs to ya Sonja!

    • March 18, 2008 at 4:35 pm

      I wonder if the diet pop could be because of aspartame or other artificial sweetners? I avoid them like the plague…as if corn syrup is much better but at least it isnt chemically and artificially made.

      A comment on b vitamins….be careful! Too much B can cause nerve damage. I was drinking several Vitamin waters a day (loads of b) plus taking a b complex. I felt worse than not taking them. I stopped drinking so much of hte water and now only take a multi every other day. Most of what we eat and drink is fortified within an inch of its life so we are getting vitamins and minerals we didnt even realize. Im not saying dont take it, just keep in mind that there is a toxicity level.

    • Anonymous
      March 18, 2008 at 11:42 pm


      I remember when I first moved to the States and spoke about going to physio, all I got were confused, blank stares. 😮 I learned to change my vocab quite a bit 😉 . Physiotherapy – instead of Physical therapy is used in the UK, Austrailia, New Zealand and South Africa, and it seems like parts (maybe more) of Canada. Its so funny to see that we are we all speak English, yet the words are often so different. hooter = horn, dustbin = trash can, boot = trunk, plaster = bandaid, fringe = bang (related to hair) I also use the word robot for traffic light, not sure if only south africans use that one :confused: … and there are many more – and after growing up with all those differences, it is still difficult to remember the correct word a great deal of the time:o, obviously my fuzzy brain doesnt help much.

    • Anonymous
      March 19, 2008 at 12:27 pm

      I want to comment on the under cooked chicken that you refer to. When I had GBS 25 years ago they attributed it to a gastro infection but I have since done some research and have discovered that food poisoning can cause GBS. There is one food poisoning (and for the life of me I have a drawn a blank on it’s name!!) that is the culprit and it comes from eating or handling raw chicken, as well as from well water. I live on a farm in rural Canada and at the time I got GBS I was raising chickens for meat so was handling raw chicken. We also drink well water. The symptoms I had just prior to getting GBS are exactly those of the food poisoning. When I had plasma pharesis, the one thing that was unusual and caused the dr’s concern was that the removed plasma was tarrish. In other words, a greenish black. It was gross. This also leads me to believe I had the food poisoning. I am curious to know if anyone else has ever had a similar experience with the plasma being so discolored? I look forward to hearing from you.


    • Anonymous
      April 1, 2008 at 5:06 pm

      I believe my pancrius has hurt on and off for about two weeks.
      Is this normal with GBS?

    • Anonymous
      April 10, 2008 at 9:29 pm


      I have questions though for those out there. Some nurses are starting to say that GBS is now starting to be linked with eating chicken that wasn’t fully cooked and also diet pops. Have anyone else heard about this as possible causes for GBS. Just wanting to know. They said the diet pops cause was in a study and the chicken connection they heard through a workshop on disease control. It could be possible about the chicken because I definatly had chicken before GBS whether it was fully cooked or not I don’t know.


      Well Im one of those GBS that got camfolybacteria of chicken, it was not well cooked and that got me down under, it is link between camfolybacterya and GBS that is a fact that I have read about.

    • Anonymous
      May 6, 2008 at 12:07 am

      I’ve read up here and noticed one thing I too had pancreatitis problems before GBS and after. No known cause truly why after GBS especially because I had my gullbladder removed shortly before developing GBS. Mabye there is a link with that as well. It might be the uncooked chicken link as I was quite sick with a stomach flu before I got GBS as well. I got IVIG though so would not know the color of my plasma. Though that could be something to look into though after getting these residuals I got pancreatitis again twice in a row and was sick for a little over a month on IV because the levels were quite high mabye that could be the cause to thee residuals acting up or what is going on now.

      The doctors still have no clue what exactly is going on but a got a flicker of a contraction in my upper leg today and now physio is willing to work on my legs. Which is good news and they started with electrodes but the muscles are quite jumpy. I also am noticing I am getting a lot of sweat from my feet and it is quite bad and physio said it is my autotomic nerves going haywire and my neurologist backed it up saying it is quite common after GBS. How do you guys deal with it.

      Also I have been diagnosed with PCOD. Which is Poly Cystic Ovary Syndrome. I tried metformin but it just made me sick and birth control they can’t give as long as I can’t move my legs so it still keeps going but man do hate the diet I have to be on with it There is barely any thing I can eat.


    • Anonymous
      May 15, 2008 at 4:07 pm

      🙂 I told the Physiotherapist yesterday that I wanted to stand up. She said do you think you can do it. I replied I would like to try, So she let me and sure enough I stood up on the parrellel bars. No weight through the legs but I still stood up. For weeks I’ve been asking if I could try standing up and they just told me they thought I wasn’t ready for it and wouldn’t be able to do it and didn’t even give me a chance to try. Man they don’t put much faith in me. I think they should let you try just to see if you can actually do something before they assume you can’t. I felt so good yesterday after that because I was able to do something I haven’t been able to do for over 6 months.

      Hope you all are doing better.

    • Anonymous
      May 15, 2008 at 6:48 pm

      Sonja, way to go. Sounds like you showed them! Knowing you could stand and actually doing has to feel good, both mentally and physically. Keep up the good work.

    • Anonymous
      May 19, 2008 at 10:06 pm

      They got me to stand on friday and got me to try to lock my knees and then try to put some weight on my legs by letting go of one side of the parrellel bars but my knees buckled. So they said I will need to get braces for my knees and learn to walk using my trunk muscles. I attempted some of what I would have to do but my muscles fatigued quite easily but I will keep working it will mean I can at least try to walk this way. Parapelegics could do it this way if they wanted to and I will do it to I don’t care if it looks funny or not I will at least be trying. That for me is the main part. The muscles in my lower legs are totally affected from the GBS and the nerves must of screwed up a bit because the muscles are not acting like they should when they put the electrodes on the muscles to make my foot go upwards make it invert instead and the mauscles around the knees don’t hold so the nerves and muscles aren’t communicating properly even though the nerve conduction study shows that they have healed and are showing normal the damged areas obviously didn’t go properly again. I’ll just adapt to this and move on.

      Hope you all are doing OK still waiting for the nursing home an in hospital till I get a bed in there.


    • Anonymous
      May 19, 2008 at 11:19 pm

      good to hear you’re headed down the road to recovery. I am just starting down the gbs road(i might still be ascending). stay positive you are all a light in my proverbial tunnel. i wish you the best with the physio. the greatest victories have all followed the hardest of roads.

    • Anonymous
      May 23, 2008 at 12:14 am

      I found out yesterday about a brace that extends to my hips that can brace not only my knees but also be used as an AFO. It costs about 2000 dollars and if I can meet the criteria it should make it so I can walk. The only thing I am struggling to do though is to get my hip flexors to go to a 3rd grade. That is what is required to have this brace, as it will enable me to not only lock the knee joint but also automatically swing through as if I were moving my knee on my own. The other criteria is to have weak upper legs and have my knees not be able to hold me up due to the weeak upper legs muscles. I fit that criteria it is just getting my hip flexors to go backwards a 3rd grade. This is proving to be quite a challenge but I worked really hard yesterdy and am able to make it to a 2nd grade, my muscles there are still quite weak and the ability to lift my leg up off a bed is not quite there and so I am a little disappointed as I really want this brace as it will mean I can actually realize my goal of walking. Even if it is just a little bit still it means being able to walk.

      I am hopeful to be able to improve more it just is going to take time. I just hate the fact I have to wait for this and that until I can do this one thing I am going pretty well nowhere. One of my AFO’s doesn’t even fit properly anymore as I have lost alot of weight in my legs and so I am practically swimming in it and it makes using it a challenge, whether I can get a new one is unsure because I am so close to possibly getting this other type of brace. What is the point in making a whole new brace for a short time. At least that is what I think is how long this will take. Still keeping strong and staying positive. Just got a new roommate and she has GBS as well. It is kind of funny because we are up at the same time of night because of the pain and tired all the time and sleep alot of the time. Thanks to me the nurses are letting her sleep as well when she is asleep and doesn’t wake her up needlessly. I have been able to help her out a little.

      Wishing everyone all the best.

    • Anonymous
      May 23, 2008 at 4:10 am

      Wow Sonja, I still say that you are an amazing person! You are like the Energizer Bunny, still going, going, etc 😀 I am so very proud of you. And to think that you got a roommate with GBS. Would it be OK for you to share some info about her ~ age, when diagnosed, etc. And please tell her hi from the GBS Family. Hugs to you both!

    • Anonymous
      May 23, 2008 at 11:53 pm

      As for as age I have to guess she is in her 60’s-70’s. She was very active before all this occured and rode horses. Today she had to get a blood transfusion, she is in a great deal of pain. Her liver has a growth on it probably from all the medications she was on in ICU. She is still on oxegen, and can’t feel alot of her body functions. She has pneumonia and has a hard time even coughing but she’s on gabapentin and she can move her feet and hands so I think that looks very promising. She has a central line so she’s llucky and doesn’t have to be poked as much as I do. She still can’t get out of bed and the pain keeps her up and she has a hard time sleeping. She likes to talk to me and smiles when I go by and I have let them know about the foundation and the forum. They are very gratful for me being there and are really glad that I happened to be her roommate. I did let them know about the liason workers that come out and they are just happy to hear that things get better and I said that they should try to use this forum to get more info on how to handle things later and that it will really help. Thats about all the advise I could give and I really don’t know much more as confidentiality and I don’t think anymore should be given out. I just say pray for her she has some obsacles to still get past to recover and not all of them are GBS related it just complicates things more.

      Hope that is good enough

      P.S. I am at a hospital in Edmonton if a liason worker wants to pop by even to see me it would be appreciated but they might like it as well. just insant message me I fill you in on the details of where.

    • Anonymous
      May 24, 2008 at 12:08 pm

      I was just in Edmonton and would have loved to meet you! Darn! I am from southern Saskatchewan (Yorkotn-Melville area). Feel free to pm me. We can chat if you like.

    • Anonymous
      May 28, 2008 at 1:17 am

      I slept in today which was nicee as the nurses are great about this fact. For some reason I seem to get this rare treat other people at this hosptial don’t always get this luxury. Mabye it is because I am headed to a nursing home, that might explain why physio doesn’t work with me as much as other patients. The only thing I can reason is that they don’t want to bother with someone going to a nursing home. I hate this fact as I would like some more physio but they keep telling me they are too busy to work with me that day or some other excuse and when I do get to work with them they limit it to 15 minutes they say it is because I have GBS and that is how they treat people with GBS but for some reason they are not always 100 percent following this with other people. I wish I knew the real reason because I don’t like how it comes across I sometimes feel like I am not worth their time. I am out to prove them all wrong including the doctors but it is damn hard when physio doesn’t help when you are ready to do something.

      Enough complaining I watched an awesome movie on TV “The Andromeda Strain” it was really good and made my day a little better it was pretty spectacular and it helped pass the time especially because the nerve pain today has been quite bad. I am really wanting out of this hospital with a passion and it really gets tiresome and boring here so TV is about my only entertainment. It has been really nice outside and I have spent time outside as well. My roommate still is in quite a bit of pain and seems to be getting a little better but like we all know we have our good days and our bad days. Her family commented to me that it is like a roller coaster I agree with that analogy. GBS is definatly like a roller coaster.

      Thanks alot

    • Anonymous
      May 28, 2008 at 4:51 am

      Most chicken and chicken eggs have Salmonella in and on them. This isn’t a guess. Use paper towels with bleach to wipe down any counter-top or sink or utensil touching raw chicken and use the same to turn off the sink water tap because you probably touched it. Clean hands and under each nail the same way. It’s really hard to get under fake nails.

      Don’t put other food down, like salads, where chicken just touched.

      Cleaning with sponges just provides a nifty hiding and growing place for Salmonella so pour a little dilute bleach on them, squeeze a little, and let them sit a while before rinsing out. Heck, throw them in the laundry with your bleached items or the garbage.

      Salmonella is really common in well water especially after rain carries the Salmonella from farm animals, like chickens, into the ground water and into your well. Also, septic tanks can overflow into the same ground water where your well is. Wow did my sister’s family get sick out at the farm.

      I am curious about the different mention of chickens and GBS in general because the viruses for making many live virus vaccines are grown in chicken eggs. The viruses have to have a living thing to multiply in and the simple and cheapest are chicken eggs.

      I have only read on this site a day or two but see the connection of certain vaccines with the GBS onset, like 1976 and the swine flu vaccine. I believe that vaccine was grown in eggs too.

      Luckily, most people get over mild Salmonella infections quickly but kids don’t do quite as well as fast. Usually it’s not treated with anitbiotics unless there’s no improvement because they can cause the Salmonella to go into hiding in the gall bladder, for years, only to come out at certain times, making you a “carrier”. I wonder if it hides and does something else we don’t know about.

      Just my opinion. Check with a doctor. But that connection by Elizabeth today about her dad and aunt (not biologically related to dad?) both having GBS and Camphylobacter is worth doing a little research since it is a GI bacterial infection also. Hmmm.

    • Anonymous
      May 28, 2008 at 5:08 am

      I hope I am posting this right.

      It is terrible that the physio. people are shorting you on your time and PT.

      May I suggest something that might work but sounds crazy?

      I’m retired, medical, and an admitted softy, but even a hardened PT can be
      “softened” up.

      Could I talk you into crying? Really. When one of those PT guys answers your sad question (make it really sound sad), I want you to put your knuckles to your eyes and make a whimpering sound. Real tears are a bonus but not required.

      Hey, it worked with me being the caregiver as well as receiver.

      Look at it this way. Why the heck should YOU suffer from someone else’s rude and inhumane behavior? If you can’t think of it as helping yourself, think of how many other weaker patients you may be helping by bringing these troglodites down to the level of humiliation they deserve.

      If they are ignoring you, it is because they feel they can get away with it. No, I am not blaming the victim, I am just saying that some of the medical folks I dealt with knew they could short some patients and not others. The “not others” were either forceful, or rich, or cute, or, most powerfully–able to cry on cue.

      If a PT or doctor or RN thinks you are going to cry, it can be one of the most motivating actions possible. Being mean brings out their hackles. Crying just makes them ashamed (and one told me it reminded him of what his real job was all about–he couldn’t sleep all night til coming back to work the next day and making up for forgeting why he studied med. in the first place).

      Just a suggestion. I’m really not nuts.

    • Anonymous
      June 2, 2008 at 1:22 am

      For the first time this weekend I had PT come up to work with me. All my bugging them might of payed off. Or mabye it is they think I am at the right level. The only reason I say this is because PT mentioned that they don’t do physio that often until they think you are at the appropriate level that it will be benificial. I don’t understand that as being logical but it must be their philosophy. Hopefully soon I should get that brace. I don’t know how it will be having it as I can imagine some possible inconvieniences to it like how the heck do you be able to go to the bathroom very quickly when this brace will be going basically all the way to my hips. I am unsure about these things but mabye I am going to find it is a little different then I thought. Putting this brace on I think will also be a hard thing to do I don’t know if it is going to take someone else helping me put it on or if I can do it by myself. I am going to have to ask these questions this next week. I do want this brace though because it is going to help me walk.

      Well other then that I am trying my best but am dealing with tonsilitis and a throat infection that is viral which for me at the best of times is hard to fight of and right now my throat is swollen to wazzo. It hurts really bad, I am trying to rest as much as possible and get plenty of liquids to get rid of it. Popsicles work great too thank god for that. The nurses make sure I have them.

      Hope that you all take care. Wishing you all the best of luck.

    • Anonymous
      June 12, 2008 at 5:59 am

      Well this brace thing seems to be in sight. It feels great. On the week-end though I landed up getting what can commonly occur in practically anyone, a muscle spasm in my neck and shoulder. So I have had to wheel around like a one-armed bandit:D . I hopefully will be back to normal soon, it sure is hard only being able to use 1 arm and have no use of anything else along wit te inability to move even your own neck. This is not a very fair thing for anyone who is wheelchair bound and shouldn’t happen.

      I sure am amazing people though in the fact I can weel around like I do with one arm. Hope you all are doing OK. I’ve run into more people around here who either have had GBS in the past or know someone who has had it. I seems quite prevelent here in Edmonton. I just ran into someone here who had it 2 years ago and is almost recovered fully wit some minor health problems after the fact. I have eeven been asked if there is a chapter here in either Edmonton or Alberta in general. All I know is so far there is no local support groups other than the internet for my area, as far as I know anyways. GBS is quite prevelent though when I look at it in this city from even the amount of people I know havee had it the same times I have in the same hospitals, less than strokes and MS but still quite prevelant that on the neurology ward the have an information area that includes GBS as one of their information on their display.


    • Anonymous
      June 20, 2008 at 5:28 pm

      Monday came around and the brace guy never came to see me, so I called on Tuesday and they told me I needed to talk to physio. I found out that he had talked to physio on Monday and they talked him out of giving me the brace because they said that they did not see me walking full time in the future. Well that was no surprise to me about the walking full time as my energy levels are low and even before this last bout with paralysis I could only really make it tops 30 minutes of walking with a walker and having to use a zimmer brace for my knee as my knee was turning inward. This might of been due to my knee problems though and add the GBS to that it makes things harder. They also said because I had some muscle activation in my upper legs that I might not need the brace at all but they also did say that down the line I might need the brace but they did not think I should have it right now. I am frustrated as they are trying to determine when I should get better as apposed to giving me the chance to improve myself on my own time. I fit the criteria for the brace and they had no rights to talk the guy out of it. I am frustrated because I feel like all the work I did was for nothing even though I know thats not true it just feels like my hope to get better they are trying to smash into smitherines. I am trying to keep optomistic but it is getting increasingly harder as the longer I’m in this damn hospital the more I am getting more and more emotional and cry more and more often. It is like my resilience is waining and it is harder to stay hopeful and keep dealing with hospital life of waiting for stupid doctors and proffessionals you have to see and there is just no real outlet to let things really out as the nurses don’t like you showing any kind of emotion around them other wise they say you are letting it out on them and that you are not being very nice. I try to leave the unit to go outside andyou still can’t really show much of your frustration even there. I hate being here the more I am here the more I need to just get out of here.

      Well hope you are all doing well.

    • Anonymous
      June 21, 2008 at 12:53 am

      Sonja, I’m sorry you are going through soo much, I am sending you Big Hugs. You need to have a way of dealing with your emotions, for your mental health. If it were me, I would just let it out on the nurses and then apologize, but only to a small extent. It is only human to deal with all the problems you are facing in an emotional way at times. As for pt and your brace I would take the lead and tell them what you want to accomplish and if they don’t like it than tuff on them. Demand the brace if you think it will enable you to move better than do it for you. Take Care.

    • Anonymous
      June 23, 2008 at 2:06 am

      I was wondering if anyone knows some ways to combat nerve pain that can get really painful at times. I am on Topamax and have just ben taken off the Elavil due to retention problems. I still get really bad nerve pain at times yet the neurologist refuses to put me on any higher doses or other nerve pain killers. The only other pain meds I have is Codeine, Advil and Flexoral. What can I do when thee pain comes and gets really unbearable. Do anyone have anything they use that helps in the short term to combat this as it usually happens at night when I try to sleep and it keeps me up and I feel like I just want to die when it comes on as it is soo uncomfortable and I just really want to sleep. I have sleeping pills on board yet when this happens nothing helps. Any ideas?

      Is there any way I can get more movement in my legs and stength in my legs that has been successful? As this is one limitation that the doctor told me why I can’t get my brace. I am always afraid of doing too much as I got muscle spasms in my shoulders and neck from over doing it last time and I don’t need to go through that again.

      Any other suggestions on other pain relievers that help would be helpful, such as does Toradol work well in GBS or not?


    • Anonymous
      June 30, 2008 at 5:03 pm

      I asked my doctor to refer me to the pain specialists/pain clinic, he refused. He told me that all they would do is prescribe narcotics and that he did not want me seeing them. Yet when I told him that I am tired of being in as much pain as I am currently he just said well I will see what I can do mabye I’ll higher your dose of topamax or epi-val(which he thinks helps with nerve pain, news to me) any way after saying that do you think he wrote anything down to do those changes. NO. I am frustrated with his empty promises and his arrogant attitude that he knows everything there is with everything. My blood pressure is extremly low yet he says he would only worry if I was older but I am young and not to worry. He knows I have secondary heart damage yet fails to test my heart out just to make sure everything is working OK. My bladder is not working to well but he only would get me to see an outpatient urologist as opposed to an inpatient urologist as he says they don’t come up except in emergencies. Then to top all things off for the last 2 days I have had increadable pain in my upper right abdomen yet he refuses to come and see me or even to check for what I’m asking him to rule out. I just want to rule out that it is not pancreatitis again, I don’t know whats wrong but it hurts, he has droped my codiene down to once every 12 hours, which is a joke and all I have left in my arsonal is Ibeprofen and Flexoral. I am in agony yet he won’t change even my pain killers to help my pain until he can get in to see me and rule things out. I am fed up and just don’t know where to go. He thinks he is such an expert even in GBS that you can’t talk to him about things and he thinks he knows everything. He just wants to ignore the aspect of the chronic pain and how it effects people. He just doesn’t clue in. It was him who took me off the adivan I was taking and a couple other pain meds when I came into hospital, he also has not been giving me my preventitive asthma puffers due to the fact I am a smoker.

      Physio is no help either as when I ask for certain things they give to other patients they just tell me I don’t need them or some other bullshit story. Friends outside can’t understand why they don’t send my to Glenrose Rehabilitational Hospital but all the Doctors automatically say is they won’t take me. They don’t even bring in the doctors fron Glenrose to assess me to make that determination they just automatically say they won’t take me.

      I feel stuck with no where to turn. I don’t know even if there is another neurologist that takes longer term patients in the hospital as the doctor I have now is the one that takes all long term cases. I don’t even know where to go for a second opinion.


    • Anonymous
      June 30, 2008 at 5:23 pm

      Sonja, this is an article from the Summer of 1998 archives, hope everyone will forgive me for posting the whole thing but am not sure how to direct you to the archives.
      Perhaps you could show it to you Doctor?

      Pain in Guillain-Barré Syndrome
      Gareth Parry, MD Department of Neurology
      University of Minnesota Minneapolis

      Guillain-Barré Syndrome (GBS) is a disorder in which the dramatic nature of the paralysis overshadows all other features. Pain is not given much attention but is an integral part of the disease; in some studies, pain has been reported in more than 80% of patients. It has been my experience that pain is frequently underappreciated and underdressed by physicians. At one extreme, I have talked to patients who have been told that they cannot have pain because pain does not occur in GBS. Pain may occur during the acute phase of the illness and may even predate the onset of the weakness or it may occur during recovery and rehabilitation. Because of space limitations, I will not discuss the emotional pain but close attention to anxiety and depression in both patients and their loved ones is a critical part of overall management of GBS. Nor will I discuss the pain which may occur during the rehabilitation process.

      Pain during the acute chase of the illness:
      Pain may be the first symptom of GBS or may develop together with the weakness. It typically is located in the region of the spine and the upper parts of the limbs. For example, there may be pain between the shoulder blades, in the low back and buttocks or around the hips and shoulders. The pain is often difficult to describe but tends to have an aching or cramping quality. There may be stabs of pain with movement. It is not at one clearly localized point but is somewhat diffused and seems to be deep in the body rather than on the surface. It is usually no more than a nuisance but may be severe, particularly in patients with rapidly progressive and severe paralysis. In such patients, who may be on a ventilator and unable to communicate easily, it is very important to ask specifically if pain is precut. This is the most neglected type of pain seen in GBS since the doctors are concentrating on the life-threatening aspects of the disease. However, when severe it may cause dangerous heart irregularities and changes in blood pressure and aggressive treatment with strong analgesics such as morphine may be needed. Care must be taken with the use of these narcotics in patients with reduced respiratory function since they may cause respiratory failure. If the patient is already on a ventilator there is little cause for concern. This pain may resolve rapidly during treatment with plasmapheresis. It also improves with steroids such as prednisone. It is also important to realize that immobility causes pain which can be alleviated by frequent turning and passive movement of paralyzed limbs so experienced high quality nursing is very important.

      Pain during recovery:
      As recovery from paralysis progresses, the pain discussed above usually subsides but may be replaced by a different type of pain. This new pain tends to be localized in the lower part of the limbs, particularly in the feet. The pain is less often of the aching/cramping quality and is more burning, stabbing or shooting. It may be associated with marked sensitivity to touch so that even the light touch of the bed sheets is perceived as pain. It is also exacerbated by exercise and weight-bearing so it may interfere with rehabilitation. This is called “neuropathic pain” and it responds rather poorly to narcotic analgesics although they should still be used in severe cases. Best responses are seen with certain antidepressant drugs such as amitriptyline (Elavil) and nortriptyline (Pamelor) or with anticonvulsant drugs like gabapentin (Neurontin) and carbamazepine (Tegretol). High doses are usually necessary and response may not be immediate. In my experience, the most common cause of failure of these drugs is that the dose is not high enough and is not used for long enough. Most patients will experience side effects if the drugs are used in sufficient doses to relieve pain but the benefit should outweigh those side effects. Another problem is patient expectations; treatment is expected to reduce the pain but will seldom abolish it. If a patient is expecting to be pain free and there is only a 50% reduction in pain intensity that will be regarded as a treatment failure and yet that is about the best that can be expected. Nontraditional treatments such as acupuncture may also help. Neuropathic pain also subsides with time but may persist for months or years and occasionally some pain may persist permanently.

      In summary pain of some degree occurs in most patients suffering from GBS and may occur at any stage of the illness. It is frequently ignored and usually is underdressed. Fortunately, in most patients it is mild and, even when severe, it usually improves spontaneously or with treatment.

    • Anonymous
      June 30, 2008 at 5:39 pm

      [FONT=”Arial”][SIZE=”3″]Sonja, am going to try to paste the ‘address’ for another article that might be of interest to you.


      My doctors felt that pain was as important to address as the symptoms, and ignoring it (or trying to) would hold me back during recovery. While in hospital i was on a patient controlled morphine pump for a week, then on 60mg of 12 hour sustained release Oxycontin, am now down to 10 mg and am suffering no ill effects. I also take Gabapentin (Neurontin) and Flexoral when needed for spasms.
      Without the Neurontin the pain is really intolerable, though it’s not severe, it is somehow debilitating none the less.
      Hope this helps.

      P.S. Don’t know if you are computer savvy or not, but if you just place your cursor next to the above link and click and drag to highlight it, then right click for “Copy” or “Cut” depending on your system.
      Then right click on the location bar in your browser and Click “Paste”
      Hope i’ve explained this adequately.
      Best wishes [/SIZE][/FONT]

    • Anonymous
      July 14, 2008 at 5:08 am

      I am finally off bed rest as I had skin breakdown and had to go on mandatory bed rest. It sure sucks when you have to be in bed when you really are not feeling sick as time drags on and on. I keep getting this stupid skin break down I only started getting this since I have been hospitalied this time no other times has this occured. It is annoying the doctor wants me to have a indwelling catheter in but it just kills me having it in as I bypass the stupid thing all the time no matter the sie and then to top it all off I keep getting infections from them and it gets to the point it is so unbearable I demand they take it out. He wants it back in but I told them no more for right now let my body heal as it is so inflammed down there I can’t possibly bear to have it in anymore. I know he wants it in so to reduce skin breakdown but it really does no good to me as it hurts way to much to have it in at this moment. I am to the point of telling them to just take my bladder out and give me a bag as I have had bladder problems all my life. I am just getting worse in that end of things and because I get a continual muscle spasm all along the muscles around my bladder that causes me to bypass any indwelling catheter that is in me. I have come to the end of my rope in dealing with this problem and don’t want to deal with it anymore. The doctor has taken me off of the Flexoral which I was unimpressed with all because he did not want me becoming dependant on them.

      I swear what out there to deal with the issues any of us deal with after GBS don’t require this that are even slightly addictive whether they are for pain or for muscle spasms. I can’t get a referral to the pain clinic because all he tinks is that they do is prescribe narcotics. I am going nowhere fast it is very annoying. I want out of this hospital because I know if I get out of here my level of care will improve surprisingly that is the truth unfortunatly. The nurses don’t have the slightest clue how to take care of me. They swithed me units to a nephrology unit because they also take on some neurology patients and when it is crowded they tend to move patients over there. Yet they have no clue how to care for someone who is parallysed let alone have the devises to take care of me in this condition. They don’t have a bath that you can b lowered into while on a stretcher type thing, or a actual shower on the unit that is wheelchair accesible and to have a shower they have to take you to a whole nother unit. They keep expecting me to do things that are impossible for me to do even on my good days. This unit either should say no to any parallysed patients or get the right equipment.

      I am still fighting with OT to get even boots to kep my feet in allignment in bed. They had the oddasity to say I don’t have foot drop even though it quite evedent I have foot drop, they won’t even fill out paper work for Easter Seals so I can get a scooter as they don’t fel comfortable doing so and wanted to say that the scooter would b more for social stuff then quality of life. I almost choked on that one. I so much want to fire both my OT and PT because they are undermining me at every turn but unfortunatly this is harder to do then switching doctors.

      Hope veryone else is doing well.


    • Anonymous
      July 16, 2008 at 11:50 am

      Oh Sonja~girl. You are amazing with how you continue to triumph in spite of the odds!! Do you have a family member or friend that could be your advocate? A “third party” might be able to facilitate some healthy change for you. Are you able to print off some of the responses you’ve had here and give them to your doc and pt? If I were “there” I’d do it for you but since I’m “here” I’ll just keep cheering you on 😀 Hugs to you.

    • Anonymous
      July 16, 2008 at 2:27 pm

      okay, im way out of the loop here, as this is the first time ive read this thread. so, forgive me if i mention something that has already been discussed.

      not sure where you are right now, but one thing you can do is [B]ask the doc [/B]to write very specific orders for physical therapy, occupational therapy, etc., but also for the nursing staff. if doc writes specifically, “Patient is to ambulate in hall with assistance (or cane, walker, etc.) every 2 hours while awake”, then the nursing staff is legally obligated to do exactly that, unless there is an insanely good reason not to. If you are unable to walk, then he can write, “Patient is to be assisted to sit in chair for 15 minutes every 2 hours, while awake”. The physical therapy order he’s written may be as general as, “PT”. ask him to write, “Physical Therapy to do ______ with patient every ______ hours dialy”. overexertion can cause some patients further harm, though, so ask doc about that, too.

      I am a nurse and i have seen these very specific types of orders written many times, especially if the doc is worried about strength, range of motion, blood clots, pneumonia, skin breakdown, etc. staying in bed dramatically increases complications with all of those things, and doctors and hospital administration will do backflips to prevent those kind of complications, and will usually do anything to make those kinds of situations better.

      You can also ask him for little things like an order for a heating pad, ice packs, an air mattress, a recliner at your bedside, etc. to help with your pain and skin breakdown. Maybe he can write an order for whirlpool therapy or PT that includes a swimming pool.

      i had to go off all medications and the pain was absolutely horrific, so i had to get creative. i would fall asleep a heating pad and 5 pillows tucked all around me. when woke up, id move around a tiny bit, and then go back to my heating pad. then, id use my massage cushion. after that, id get in the pool and rest in an inflatable chair with a high back and arms on it, rather than one of those flat lounge rafts. that worked good for me because i was too weak to stand or walk in the pool. the water felt like a cushion all over my body and took the strain off all of my muscles and joints, which helped tremendously. after that, id go take an epsom salt bath or shower. it was my daily ritual that got me thru some really painful days. if you have skin breakdown, though, ask doc about the salt first.

      i’ve read this week about the growing popularity of therapeutic epsom salt pools. they are ordered for people with chronic pain and depression and are protected from light and sound. theyve done studies that show wonderful results.

    • Anonymous
      July 27, 2008 at 4:02 am

      I have been put on isolation so it is hard to get t the computer. They found e coli in my urine and I am on isolation. Man is it boring but the one good thing out of it I finally earned myself a private room out of the deal. I’m not being treated at all for it so don’t know what to do whether or not it will ever go away. So for the time being am enjoying the peace and quite just can’t get on the computers here very well due to the isolation proceedures. Hope everyone is well.

      Good Luck All

    • Anonymous
      July 27, 2008 at 11:45 am

      Sonja, I’m Praying for you Hun. I hope you can get some kind of treatment and soon. They should be taking better care of you. Please try to keep in touch, any way you can. Big Hugs!!:)

    • Anonymous
      July 27, 2008 at 12:15 pm

      Sonya, wish I were in Edmonton. May get there soon so will if I do, I will look you up. In the meantime, take care and keep demanding that your needs be met.

    • Anonymous
      July 30, 2008 at 4:27 am

      Well yesterday I gave the nurses and doctor a good scare. I had an asthma attack that lasted from 10 AM to 9 or 10 PM. Around 4 PM I ended up passing out and stopped breathing. They gave me straight oxegen to get me breathing again, though still did not treat my asthma. I got a total of 4 treatments through the whole time. I swear if you are on a unit upstairs here they will kill you if you have asthma. I would of had better treatment in ER then in the unit. They did not call for respritory therapy or for the MET team (Medical Emergency Team) all they did was tell me I was hyperventalating which was bullshit and fail to treat my asthma the way it should of been treated. I was afraid I was going to definatly die.:eek:

      Good news though I am finally able to kind of move my big toes and some random toes slightly by myself. It doesn’t happen all the time but when I really concentrate I can do it and get them to twitch.:D

      Still in isolation but trying to make the best of it. Still finding things frustrating and don’t really know what to make of what is going on.

      Hope you are all doing well.


    • Anonymous
      July 30, 2008 at 10:20 am


      I want to tell you to find a different hospital! This place does not sound like a good place to be. I remember one of the hospitals I was in. I always said if you wanted to die that would be the place to go, because sure as shooting the care would kill you. Is there a chance you could get transferred to a different facility? Do you have family close by that could advocate on your behalf?

      As to the movement….Awesome. It feels good when you finally see something occuring and have a sense that things/feelings are returning.

      Take care and keep us posted.


    • Anonymous
      January 30, 2008 at 9:23 am

      Hello everyone.

      I havent been able to give an update b/c I’ve been so busy my head spins.

      My sister was in Mexico for a week so it was just me to tend to my mother.
      Mom got to come home from the nursing home/rehab facility this last Saturday. The reason she came home is b/c her medicare part A days had run out. On Thursday, two days before coming home, they called me at midnite and said they’d sent her by squad to the hospital. I met her there within 30 minutes and we stayed until 430am. I got home just as my alarm clock was going off. She went in b/c of chest pains but they said her EKG was good and that she has some congestive heart failure and was on the tail end of pnumonia. She’d been on anitbiotics for seven days already. They said there wasnt any reason to admit her .

      Saturday I brought her home and I stayed with her. We werent home an hour and she fell. She was so weak that she couldnt even stand unassisted.
      I have been busy lining up home health care for her and the first lady started Sunday night. To make a long story short…mom didnt eat, was again going down hill fast…struggling to breathe, in pain, and just very uncomfortable.
      Yesterday she went back to the hospital…a different one this time…by squad.
      She has pnumonia again and they think some of the spots on her lung…besides pulmonary fibrosis are spots of cancer that has spread. She had another ct scan but they said there is no way to really know without biopsies but that they wont put her thru that.

      So, here we are again. Back in the hospital. She’s been in the hospital or in a nursing rehab since Aug 7th and home no more than a total of two weeks all together. I have been with her every day. It’s hard but I have to be there …my mom and I have always been close.

      She struggles to breathe. She went from 165 to 119.

      I dont know how long she’ll be in the hosp this time or where she’ll go from here.
      It’s so hard and so scarey.

      I have found a small nodule on my breast that has left me petrified b/c my mom had the breast cancer. I’m sure it’s nothing but it is still scarey. I go tomorrow to the dr for her to check it. She wouldnt just refer me for a mamogram without me coming in first. THAT made me a bit mad. I guess it’s more about getting my co-pay and billing my insurance than getting me in for a diagnostic mammogram right away.
      It’s embarassing enough isnt it ?

      I also have a “moderate to severe” bulging disc in my neck and the neurosurgeon recommends surgery. I dont have time to have surgery or be in a neck brace for 6 weeks right now so I’m going to try some epidural injections.

      Everything with the CIDP seems to be the same. I am glad about that. I have the weird sore on my toe tho and even though I am numb…I am starting feel a pulling around it.

      Connor is an amazing kid that keeps my life worth living. Every day we’d go to the nursing home to see my mom and he’d be so well behaved. How boring it must be for a five year old.
      Then she came home Sat and he was so super happy. He would ask , “Nana, do you need some pop, do you want a cookie, etc”. Yesterday I had to pick him up from daycare and tell him we were going back to the hospital. I handled it pretty well and said, “guess where we’re going…we’re going to the hospital again and we’re gonna get anything we want from the snack room”….We always help ourselves to the little ice creams or pops and cookies. Why not. He was ok with it and didnt really ask why Nana was back in the hosp.

      Thanks for listening and I hope everyone is doing well.

      Thanks for always being here for me.


    • January 30, 2008 at 11:51 am

      Oh Stacey,
      I am so sorry for all that you are going through! Soon, God has to give youa break. I understand what you mean about your little guy keeping you going, I feel the same way. Good luck with the breast exam. Last year I too had a scare, turned out to be nothing. It is probably good to have a baseline at an early age with your mothers history. I am confidant that things are going to look up for you, sooner rather than later. I will pray for that!

    • Anonymous
      January 30, 2008 at 11:59 am

      Dear Stacey, Please let us know how your exam went. It just has to be a scare, you are handling so much right now.
      Prayers your Mom will start doing better soon. Watch those falls, broken bones come easily for us old girls.
      Your Nebraska Pal, Regina

    • Anonymous
      January 30, 2008 at 12:56 pm

      oh Stacey,
      I am so so sorry. I hope it helps you to at least check in here and see that we all care so much and are here for you. If there is anything we can do please let us know. I will be thinking of you as always.

    • Anonymous
      February 1, 2008 at 10:14 am

      You”re such a strong, amazing woman! You handle so much – I’m sorry for your overwhelming troubles right now. You’re in my prayers and I know everyone on this forum is out there supporting you right now.

      Peace, cathy

    • Anonymous
      February 2, 2008 at 12:56 pm

      thank you so much for you support ….it REALLY means alot.

      My mom had a surgery yesterday and the plan was to go in and take a piece of the lymph node near the sternum and then insert a chest tube to drain some of the fluid.
      They went in just under her neck on the front of her chest. They did not do as planned. She is full of cancer in her sternum, the lymph nodes and the area in her lung isnt fluid…in the pluera space…it’s all tumor. She has many tumors on both lungs. We were told her prognosis is very poor. The plan is to keep her comfortable now and we’ve contacted Hospice. I dont know how long she’ll be in the hospital or really what the next step is. We dont know how long we’ve got with her…only know that its not long enough.
      I am selfish to not want to let her go …tho, in my heart I know that the time is coming and when it does all of her pain and suffering will be over.

      I also had my mammogram and have to have a biopsy. the lump or whatever it is …is very small but needs to be biopsied to rule out the bad c word. It showed to be fluid on the ultrasound but since there was a grey area within it, the radiologist said biopsy and possibley even remove it. I’ll talk with my dr on Monday to decide what’s next.
      Right now, my mom is the most important. I am working today b/c my job entails deadlines that I have to meet and nobody else knows how to do what I do. Nice, huh.

      I’ll keep you posted.

      thank you in advance for your prayers.


    • Anonymous
      February 2, 2008 at 1:00 pm

      i forgot to mention that the cancer is also in her liver. They wont do any more scans to look for any more…I guess we dont want to know anyway.

    • Anonymous
      February 2, 2008 at 3:59 pm

      My thoughts and prayers are with you, your Mom and your family. It is just so much to handle. I hope you can find peace.

    • Anonymous
      February 2, 2008 at 11:38 pm

      Tonite we were told by the Cancer dr’s partner that they are waiting for lab results to tell us if this is a lung cancer or breast cancer that has metasticized. (however you spell that dreadful word).
      They are quite certain it’s lung ca that has spread and he called it stage four. I wish someone could tell us how long we have with her.

      She had a rough day.

      I worked today for a while and went straight to the hosp from there and just got home a bit ago. My left foot, the worse of the two is really zinging. I havent had much trouble but tonite it’s that yucky feeling of when your foot falls asleep and is numb and I just want to shake it off but it wont shake off. I cant “wake” it back up. It’s not like I can move it much anyway. It’s always numb but tonite it’s zinging or spasming or something. I’m going to take a hot bath and see if I run cold and hot water on them it will help. I hope this doesnt last long. It started this am and I’m sure it’s from exhaustion. I can barely keep my eyes open.
      I didnt want to leave my mom tonite but I think she’s going to be ok. She’s not leaving yet..I dont feel it in my gut…not yet.

      I’m ready to go snuggle with my wonderful husband. He has been so supportive and understanding. I count my blessings b/c I know not everyone has a good marriage. I dont want to take him for granted.

      I’m rambling now, huh. I need toothpicks to keep my eyelids open.
      take care everyone.


    • Anonymous
      February 4, 2008 at 1:35 am

      Ohhh Stacey, I’m soo sorry to hear all that bad news. You and Your Family are in My Thoughts and Prayers. Please make sure You take the time to take care of yourself also. I wish I lived close to You to help, just know Your Family is Here for You! Big Hugs!

    • Anonymous
      February 4, 2008 at 4:13 pm

      Oh do I know all to well what you are going through and it is not easy. As you know, my father had lung cancer and I lost him in 2005. If you can, keep your mom in hospice at a facility or hospital as opposed to doing it at home. You will get much more support and will be able to focus on just being with her and comforting her. Also, don’t be afraid to let them use Morphine for her comfort. It is really a good thing to keep her out of pain. She will still hear you even if she looks out of it. I am sorry you have to go through this. There is no greater pain than losing someone you love. If you need anything or have any questions feel free to e-mail. I am here for you. I am praying for you and your mom and family.
      Much love,


    • Anonymous
      December 8, 2007 at 8:37 am

      Went to neuro. thursday and got some good news….he cleared me to go back to work yeahhhhh 😀 then changed my meds slightly…instead of doing the methylpred. by IV now he wants me to start doing it in pill form…that lead to the fun part of the day…..he wants me on 500mg methylpred one day a week then 400 another day for a couple months then taper it down to 400mg twice a week…that led to the fun part…..took the script. to the pharmacy and apparently the largest pill they make is 32mg…and of course no-body in St. Louis stocks the bloody things and all they can find is 8mg tablets…naturally the soonest they can get the large pills in is monday and fri is med day which led to an interesting decision….take a chance and take the meds 3 days late or choke down 54 8mg pills…..since the next dose is due tues I chose to choke down all 54 pills 😮 so i wasn’t double dosing myself and taking a chance on relapse over the weekend….then it got even better…pharm. called and informed me that since they had partially filled my scrpt. with the small pills they had to fill the rest of it at least for this month with the little one’s due to some obscure law I never heard of…boy the ins. co. is gonna like that one. :rolleyes: Mebbe with all these little pills I better just get a small funnel and have someone just start pouring…lol 😮

    • Anonymous
      December 8, 2007 at 8:42 am

      Can’t your dr just write a new script & it will cancel out the other one. I would call the dr to see what he can do before subjecting yourself to taking all of those pills. I worry that with having to take so many of them that it’s easy to accidentally miscount or overdose.

      I think a call to your dr ASAP is in order for this one.

      Good luck,

    • Anonymous
      December 8, 2007 at 8:52 am

      Already have a call in to him but since it’s the weekend I don’t expect to hear anything till monday or tuesday…..Am also gonna check and see is the hosp. pharm is covered by my ins. and try and get it filled there cuz I suspect that if anyone has that dosage in stock it would be there…should have done that the first time but since the hosp. is on the other side of town I wanted to use the local pharm……oh well lesson learned


    • Anonymous
      November 17, 2007 at 10:48 am

      Today is the three week anniversary of coming home from hospital after being diagnosed with CIDP on Sept. 15. When I got home I was stil almost totally wheelchair bound and barely walking with a walker, and could barely open an open juice bottle.Today am walking almost a mile without assistance, and my arm and hand strength is about 50% of normal. So far the biggest residuals I am seeing is limited endurance that I know will take some time to get back and my hands/feet still are tingly…again mebbe given time that will gradually fade away as well.

      Don’t know if I had a mild case, was bullheaded enough to seek out medical help quickly or if my good fortune in having 2 very fine Dr’s that specialize in GB/CIDP are the contributing factors in such a quick recovery…or at least appparent recovery but am totally amazed….back in Sept. when I was diagnosed I would have laughed at anyone that said that I would be doing so well this soon….am just hopeful that when the relapses come they will be able to get it back in check just as quickly.

      Yesterday was also a wonderful day when the PT/OT ladies told me that I had gotten as far as I could with them and that starting Tues. I would be working with the ladies that specialize in the go back to work stuff…mebbe with a few visits with them will be able to go back to work this year….that would be the best christmas present I could get.:D 😀

    • Anonymous
      November 17, 2007 at 8:08 pm

      WOOOHOOO!!! Keep Up The Good Work!!!!:D

    • Anonymous
      November 17, 2007 at 9:27 pm

      I am so happy you are doing so well. I am hoping for an early Christmas present too, hopefully I will get back to work around the 15th of Dec. (after being off since Aril of this year).


    • Anonymous
      September 17, 2007 at 4:28 pm

      Hi everyone,

      Some of you know my story, but as recap. I was dx 4 years ago at the age of 20. I was originally dx with GBS, and then with CIDP about 5 months after. The first 10 months after my intial dx I was was constantly up and down. I tried many methods of treatment, which would bring me up a little, but by the end of the week I was worse then the in the beginning. Over the course of those 10 months I gradually declined until I bottomed out as a complete quad dependent upon a respirator and a feeding tube in the ICU for 3 months. I was in recovery for 6 months slowly regaining control of my life when it hit me again and took me back down to a quadrpalegeic for about 3 months.

      I am estatic to say that I have been in recovery for a year now, and have not had to stay overnight in the hopsital since then, which is a huge accomplishment for me because I have lived in the hospital more then I have lived at home in the past 4 years. This summer has been the best summer of my life. It has been the first one I have not spent June -August in the hospital over the last 3 years. Last Sept I was in a wheelchair and since then I have been able to build myself up to tolerating 2 mile walks, I got my drivers liscence back, and have reached many milestones.

      This was the first summer of my life that I have not had to work, spend in the hospital, or go to college so I spent it having fun. I was able to walk around 6 flags all day and go on the rides, I went to 3 headliner concerts, I was able to go on the all girls camping and float trip that we started doing anually when we were in highschool. I walked around the St. Louis zoo, art museum, and science center. I went go-carting, bumperboating, played minature golf. I have also begin to rebuild relationships that were lost over the past 4 years. I proved to myself that I can do about anything I set out to do.

      Thank all of you for your continuing support, I don’t think I would of made it through everything without all of your input and support.

      Take Care Everyone,

    • Anonymous
      September 17, 2007 at 7:49 pm

      Hi Emily,
      Wow, you have done so well! I hope you continue to improve. It sounds like you have been having a great time this past summer. I feel tired, just reading what you have been up to!
      You have such a positive attitude towards life! 🙂
      Best wishes,
      Kazza – CIDP

    • Anonymous
      September 17, 2007 at 8:15 pm

      EMILY what a great update! Congratulations! Just reading your story has given me so much to look forward to. I have only been in this for 23 months and can do alot of things but you are doing the things that I wish I could do. Well maybe not all of those things, but the walking is my main goal now! The best report we have got back in a few weeks. I hope everyone has a chance to read your story! Thanks for sharing! You make me work harder and reminded me not to give up! 😎

    • Anonymous
      September 17, 2007 at 9:02 pm

      thank you for sharing your story. it has given me hope.

    • Anonymous
      September 19, 2007 at 1:14 pm


      I am so happy for you that you got to enjoy your summer, you deserve it.


    • Anonymous
      September 22, 2007 at 1:06 pm

      Hi Emily,

      It’s so great to hear that you’ve been able to do so many things! Given that I’m just two or three years younger than you, I find that all incredibly inspirational. Thank you for sharing; it gives me some hope!

      – Dana

    • September 22, 2007 at 2:10 pm

      Hi Emily,
      Boy, you sure did do tons this summer! I am so happy for you!! I wish you continued improvement and lots of Fall fun!! Winter! Spring! And Summer again!!!
      Dawn Kevies mom 😮


    • Anonymous
      September 15, 2007 at 7:47 am

      I thought I’d give my online family an update. I sort of fell out of existance for a few weeks here. I have had a busy time. I finished all my testing and it has been determined that the cancer is only in my breast and 2 lymph nodes at this point. I was relieved as I have constant back pain and thought it would be spread to my bones also. I had a port placed without incident and have had one round of chemo which other than extreme fatigue for a few days went well. One down 3 to go! I have a schedule set up. One week chemo, next week IVIG and then one week off for good behavior. 😉
      During this time also, I lost my oldest sister suddenly to a heart arrythmia so I had a family funeral to attend. My sisiter stayed with me last year when I came home from the hospital and we had many “reminiscing” talks and talks about parenting. I will now cherish that time I had with her even more.
      Well that is my story. I will try to post updates every so often to let you all know how things are going. The Dr’s don’t even know what the chemo might do to me so its just a wait and see what happens. I know others have received chemo for treatment of CIDP and it has helped. I am hoping for a similar scenerio except my drugs aren’t the same. I am getting adriamycin, avastin, and cytoxan. Thanks again for all the thoughts and prayers. I am a firm beleiver that they are heard.

    • Anonymous
      September 15, 2007 at 9:14 am

      Dear Jan, Sometimes the bad just never seems to end:( . I sorry to hear about your sister and it is good that you had that time together last year. Praying for you on you next rounds of chemo, I hope the IVIg gives you a little break from the fatigue on your ‘week off’.

    • Anonymous
      September 15, 2007 at 10:45 am

      I was actually treated with cytoxan for my CIDP & it did put it into remission back in 2003. I was put on 1140 mg infused 5 times in 10 days & then 1800 mg once a month for 8 more months. I don’t know the dosage you are getting, but it could be enough to help stop or at least slow down the progression of your CIDP. Anyways, good luck with your cancer treatment, I am so sorry you are having to go through this in addition to the CIDP.

      I am also so sorry to hear about your sister, how difficult that must be. I only have one sister & I can’t imagine losing her. She just turned 60, but I still think of her as being so young. She does not live close to me, but we talk on the phone almost every day. I wish you all the best in your recovery…

    • Anonymous
      September 15, 2007 at 10:54 am

      Oh Jan ~ I am truly sorry that you have more issues to be concerned with. Life can be rather daunting, eh? And, I can’t imagine what it feels like to lose a sister, one who has cared so dearly for you . . . Please know that you are in my prayer thoughts and I’m sending hugs 🙂

    • Anonymous
      September 16, 2007 at 2:04 am


      You have got more than you need right now. I hope and pray that things work out for you.

      Remember that CIDP seems to get a boost when stress is added to the picture. Stress won’t cause CIDP, but it seems to make it worse. Find someone who can elp take the load off, so you can get some much needed rest. You have so much on your plate right now, let someone else carry some of the load for you.

      Take care of yourself. You can get through this.

      Dick S

    • Anonymous
      September 16, 2007 at 12:07 pm

      Jan, I’m soo sorry to hear about your Sister. I have one, younger, who has been to visit during my events-great times were had in the hospital-great for recovery. You now have a Great Guardian Angel looking over you and there for you during All your hard times. Look on the brightside Jan, maybe your chemo treatments will put your cidp in remission or even wipe it out;) . You’re in my Thoughts and Prayers. Big Hugs!

    • Anonymous
      September 17, 2007 at 9:42 am

      Thank you for the thoughts, prayers and hugs! I can feel them all coming thru. My plate right now is more of the “platter” size but so far with “better living thru chemicals” (drugs) I am doing OK. I do have a wonderful at home family that are my rocks and we are getting thru this together. I feel like my ordeal in the past 16 months with CIDP was my training for this. We have learned to take one day at a time and be happy for that day if its a good one and get thru it if its not. So far stress has brought out more tingling in my hands but an extra neurontin here and there has helped me. 😉 I will keep you all posted as to my progress.

    • September 17, 2007 at 10:17 am

      DEar Jan,
      I am so sorry about the loss of your sister, it is good that you had quality time with her last year. Regarding your treatment, as Pam mentioned the drug you are taking for your cancer is used with cidp. Maybe with the help of God it could take care of two problems at once. That would be such a miracle. I am praying for you, as I too believe prayers are heard and sometimes answered if God sees it in his plan.

      Dawn Kevies mom:o

    • Anonymous
      September 18, 2007 at 2:21 am

      Hey Jan,
      So glad to hear from you but so very sorry to hear about your loss. I am thinking of you often.

    • Anonymous
      October 9, 2007 at 11:42 am

      Well I thought I would give you all an update. I am half way done with my chemo, bald as a cue ball but have never felt better in a long time. I am stronger and my balence is improving. I am able to walk around my house with a quad cane and outside with the rolling walker. I visited my neurologist yesterday and he confirmed that the chemo may put the CIDP in remission too. I may get the 2 birds with one stone effect from this. My cancer seems to be responding to the chemo as well. I still have surgery for a mastectomy but the fact that I am actually improving on the chemo is enough to give me renewed hope. Its nice to report good news for a change! 🙂

    • October 9, 2007 at 9:02 pm

      Hi Jan! I am so happy for you, it sounds like you are finally catching a break. I had a feeling (my earlier post on your thread) that God would make sure and take care of both problems.

      Kevie and I will pray that your surgery goes smoothly as well. Regarding your hair, at least you don’t have to waste all that time fixing it in the morning!!!!

      Have a great day tommorrow and be strong!
      Dawn Kevies mom

    • Anonymous
      October 9, 2007 at 10:47 pm

      Jan, Bald is Beautiful-just think how you will look when it is able to all grow back-have fun trying different hair dos!:) Glad to hear things are going well for you, you deserve it Hun! That would be Awesome if it takes out the CIDP also!:cool: Keep Up Your Wonderful Attitude! Take Care.

    • Anonymous
      October 10, 2007 at 11:21 pm

      What a bad/good roller coaster ride?
      Just good to hear they’ve found some sort of ‘balance’ to each ‘therapy’ I guess?
      I was super lucky to skip the ‘chemo’ and go straight to the AI’s [chemos by another name] and I know what all it can do to your mind and body! The best thing is to straight out CHILL out and take things as they come…when your INTERNAL self says SOMETHING isn’t ‘right’ speak up, and very loudly… You and only you know or have a clue as to the what-alls are going on. My docs’ now that I have good attenentive ones, do not IGNORE my concerns…I’ve been right 3 of 4 so far..and honestly I don’t want to be right anymore?
      BUT getting things RIGHT ASAP has kept a lot of issues from getting worse. Who needs compounding issues on other issues? Nuff already.
      Go forth and be productively, politely assertive! Hope you get results and fast!

    • Anonymous
      October 11, 2007 at 1:34 am

      You are such a wonderful trooper. It sucks so bad losing losing a family member. I don’t know you story, but I feel for you. I lost my only brother and my dad within the last three years. I miss them both so much. They were so close to each other,too. They were like Abbot & Costello, so funny. I’ m sure you have a lot of good memories about your sister too. Keep those memories close to your heart. It helps. A Lot. My prayers are with you.

    • Anonymous
      October 11, 2007 at 1:57 pm

      Thanks for all the wishes and prayers. I was excited to bring good news for a change. I must say there hadn’t been a lot of late for me. I also saw my surgeon today and she did an ultrasound and it showed shrinkage by one half on both my breast and lymph node tumors! This still won’t get me out of the mastectomy surgery but it shows the chemo is working to do that after just 2treatments!

      By the way, I did try the wild hair thing already. I had a mohawk done when I got my hair cut before I lost it. If I knew how to post a picture I would share it! It only lasted about 5 minutes but the “memory” will live on forever! :p

    • Anonymous
      October 12, 2007 at 8:41 am

      Jan, That is Good News! Can’t wait to hear the chemo worked on your other issues as well! pm Liz about the picture posting business, she can explain it better then I can. Keep up the Goods!:) Hugs!

    • Anonymous
      November 8, 2007 at 8:02 am

      I thought its time for an update for all of you. I have been doing well with everything. I have even started back to therapy 2 days a week! I am getting my #4 cycle of chemo today. Its not bad….just a couple of days of tired and blah feelings sort of like my reaction to IVIG which I still get every 3 weeks. My cancer is reacting well to the chemo. The ultrasound showed both tumors shrunk by 1/2 so I think that is a good response.

      More exciting is my progress with the CIDP! I am now able to walk with a regular cane! I haven’t done that since May 2006! When I started the chemo in Sept I was using a rolling walker which I had worked up to from the wheelchair. I feel like such a big girl now! Another exciting feat is my ability to get up out of a chair without arms. I haven’t been able to do that the whole time either and as we all know you can’t get off a toilet then either! I am still perfecting this one as I have to take a rocking start so it doesn’t work in a bathroom yet but I am getting there. I was sure excited the first time I did it as I have been trying for months to accomplish this one! My fine motor has improved as well and I am able to type now without hitting the wrong keys all the time with wandering fingers that had the tremors in them. My oncologist is about busting his buttons as he is more excited I think about the improvement in my neuro status than the cancer!

      Well that is the update of the month from me….sorry to be so long winded but it is exciting for me!
      Take Care,

    • Anonymous
      November 8, 2007 at 10:44 am


      I am so happy for you ! It’s always a relief to hear some good news. I’m glad you are feeling good and doing so well ! My mom had a mastecomy and the chemo they did afterward was a monster. She lost her hair after the first round but when it was over and started coming back…she looked so cute. She was cute bald…as I’m sure you are, too. But, her hair came back silver and curly and she looked so good. Cancer is a very tough road without CIDP and I admire your will and your fight. Congrats on the cane…you go girl !

      Wishing you continued improvement…

    • November 8, 2007 at 10:57 am

      AWESOME NEWS! I am so glad things are going so GREAT! Your determination is amazing! Keep up the good work.
      Dawn Kevies mom


    • Anonymous
      July 28, 2007 at 11:32 pm




    • Anonymous
      May 31, 2007 at 8:57 am

      Hi everyone,

      If you can please read my recent post on terrified and questions…. Any advice would be great help. Also, the nurser were wondering why my dad has so many secretions in his mouth and throat. Thanks, Kim

    • Anonymous
      May 31, 2007 at 11:42 am

      I cannot believe the nurse is asking why he has so much secretion! He has just come off the vent, everywhere, including his throat, mouth, lungs etc are very very weak and its extremely difficult to swallow still. As a result he will be drooling and it will most probably be difficult for him to ‘keep up’ with his spit (dont quite know how else to say it).

      I cant remember if they are giving him PT or OT. Also the physical therapist still needs to be clearing his lungs – where she ‘smacks’ the side of his abdomen where his lungs are (on each side) to get rid of the mucus as he is not strong enough to get out – If the moisture is not removed this can be the cause of pneumonea.


    • Anonymous
      November 6, 2006 at 8:34 am

      Good Morning all! I wanted to thank you for all of your posts to Newly Diagnosed – GBS. I really wasn’t able to get into much detail the other day on my post as I was at work and doing some research on GBS. So I have a few minutes this morning to update. Like I said my boyfriend who is 29 was diagnosed with GBS, actually the Miller Fisher Variant. He rec’d a flu shot on 10/13, and started having a headache that evening after a week he went to the chiropractor due to the headache and some numbness in his left arm, still no relief. Well last weekend he wasn’t feeling good. I came home last Saturday night to find him on the couch, unable to walk, numbness and tingling, slurred speech, double vision, etc. Of course being an RN, I immediately thought oh my gosh he’s having a stroke. He refused to go to the hospital and thought it was just the Tylenol with Codiene he had taken for his headache. In the morning I finally talked him into going to the ER. I got him there and the MD diagnosed him with a severe migrane after lab work and a cat scan. I was furious that they sent him home, I had to go find a wheelchair to wheel him out because he could barely move. Being that he didn’t have a PCP I called around last monday morning to find him one. Luckily I was able to get him into one and after some tests in the exam room the MD directly admitted him into the hospital. The Neurologist did an MRI and other tests and at first came in and diagnosed him a possible stroke. It wasn’t until later that evening that he was diagnosed with the Miller Fisher Variant of GBS. What a relief to hear a diagnoses. They performed a spinal tap on Tuesday and due to no abnormal findings of high protein, etc. Corey was sent home on Wednesday. I wasn’t very happy that they just sent him home, but I felt that I would be able to take care of him at home.
      He’s doing a little better than last Monday at this time. But he is still suffering from the double vision, the numbness on the one half of his body, the headache, and difficulty ambulating. I just feel that we are blessed that his paralysis didn’t get worse. I take him back next week for a follow up and am going to talk to the MD about Physical Therapy. I can only pray that he will being to feel better soon. He has been able to sit up for longer periods of time now, so it’s a start. I’m just so glad that I found this forum. Sorry my post is so long. I will continue to keep you all updated and thank you for your support.
      ~Erin- RN

    • Anonymous
      November 6, 2006 at 8:39 am


      I hope that he continues to improve. Im not sure wether you know, but, sometimes a spinal tap will give a false negative reading, and does not necessarily mean that the protien is low.

    • Anonymous
      November 6, 2006 at 9:33 am

      Hi Erin,

      Sorry to hear about Corey, but glad he has a diagnosis. What types of medication did they put him on when he was sent home. Did they do IVIG or Pheresis? Anyway please keep us posted, let us know if we can help. Take care and please send him my best also.


    • Anonymous
      November 6, 2006 at 1:12 pm

      Erin i’m glad corey finally got a dx but to have to take care of him at home and have no support for you that is a big job for anyone. why didn’t they keep him in the hospital and treat him with ivig or pp? it will help stop the progression of nerve damage. keep us updated on coreys’ condition and ask any questions you have. take care of yourself also.

    • Anonymous
      November 6, 2006 at 3:30 pm

      They actually didn’t send him home on any medication nor did they administer the IGG Immunoglobulin IV therapy. The MD said they didn’t need to because his spinal tap results came back negative. I have to say though while I’m at work during the day my mother is taking care of him. What a huge help that has been to me. But like I said… I was shocked when they sent him home and said to just wait it out. I ‘m just shocked that we are suppose to wait this out.

    • Anonymous
      November 7, 2006 at 12:51 am

      [QUOTE]I’m no expert but you mentioned he had trouble with his vision. People with Miller Fisher variant of GBS often have trouble with their vision. [/QUOTE]

      sometimes i think we know more than the socalled experts! LOL


    • August 2, 2006 at 3:39 pm

      Hi all

      okay I am still being blown off by the original neuro but after numerous phone calls I did manage to get an appt for this friday with a regular doctor. Other than the ER it was the earliest I could get seen.
      Last night I had panic attacks and was very uncomfortable, I was headed back to the ER but managed to calm myself down and felt somewhat better. Today I am weak, tingling, and tired. It has been 4 weeks since the onset and this is how things have progressed…should I be hopeful it wont get worse??

      Started feeling things change the first week of july in my toes. Which I thought was my sitting position.

      Second week it was my feet and legs. Felt weak, numb and tingling. Really thought I needed a chiropractic appt and a new desk chair.

      End of the third week is when I ended up in the hospital for 2 days. A battery of tests showed no problems and I was discharged with instructions to seek out a psychiatrist.

      Near the end of the 4th week I have bouts of weakness and tiredness, sometimes more tingling than usual, then I will feel better because of less weakness and fatigue. Although I am quickly learning that even though I might feel sort of okay, I shouldnt overdue things. The wierd feelings have reached my face…..tingling and a bit numb which is freaking irritating, but so far no problems swallowing or breathing (except when I have the anxiety over all this kick in…which is relieved with relaxation, a cold towel draped over me, an ice pack, and benedryl…still havent been able to make that appt with the psychiatrist, but will continue to try since I do feel something along the lines of xanax/antidpressants would help ease the fear side of this stuff).

      I am still able to walk…in spite of the feeling of weakness…do have pains, can go to the bathroom on my own, shower, wash and dry myself and my hair (it is a little hard because of the weakness). I am still afraid of what will happen to me, I am afraid of the treatments they may prescribe (I dont like feeling lightheaded and dizzy which seems to happen with PP. Something about the feeling of losing control that terrifies me. Not a control freak, just prefer to be in control of my own self).

      I am really really really hoping that all the research I have done that the above means this wont become “severe” and require ventilation or whatever. If so, I hope to hell they knock me out because I dont want to think about what is happening to me or how my kids are or whatever.

      The fear of this is so overwhelming. Then the helplessness adds to it and not wanting to bother anyone for help but knowing you cant do it all on your own. To top this all off, this is good ready for this one? My mom, who has health problems and i take care of seems unconcerned with my problems and keeps telling me of her own (which trust me, after taking care of her for so long I KNOW ALREADY!). She actually still expects me to cook and even wanted me to take her to a dr;s appt!!!! I stared at her in disbelief, asked “Do you not understand what I am going thru right now??” Trust me, I am trying to still get things done when I can, rest as much as possible (hate feeling lazy), and meditate when I can relax my mind enough to do so. My kids and hubby are my life, I still want to take care of them but also am taking into account that hubby is working very hard to bring in some money. So I do what I can without bothering him too much so he can finish his project and we can get paid….we really need groceries (not sure how I will pull that one off, scooter and one of the kids I guess).

      Okay I need to go lay down for awhile and rest.

      Praying for myself and everyone!