That is a bit of really great information and I thank you so much for posting it. I now understand so much more. 🙂

Thank you each and everyone for your input, I learn so much from this website, I truly am grateful! Each one of you makes me feel more empowered to ask the right questions to my Docs. I am being seen this Wed. The 9th At UCLA Medical Center here in Los Angeles, please pray the Lord will give the Doctor the right answer to my health issue, sometimes I feel like I’m completely falling apart, all this numbness is so distressing as many of you know! but God is good and I trust him with my life. blessings, Jan

Hi Mark… Thank you, we have an Appt. to speak with him. I also have an appt. with Dr. Bella to speak with him… I do hope that all this talking results in fruitfull results. I do want to make it to the next national conference and My daughter does as well…

JCron, I agree with your .02, however this Dr. is not allowing this to recurr.. thus a new Dr. is in order.

We are doing a lot of research and phone calling and recently had a great conversation with a pulmonologist… very insightful…

THank you Thank you

Thanks to all of you for your concern and all of you have such good suggestions, yes my appt. Is Nov. 9th, this has been such a long road for me to even get a diagnosis, has that been what many of you have experienced? I know it’s important to get a diagnosis quickly and to start on treatment, but my Docs are taking their sweet time and don’t seem to be in a hurry with me, I am really worried to say the least, they keep telling me they just want to be sure what they are treating, in the meantime I get more numbness, if that’s even possible I am so numb and tingling everywhere. How do you get them to treat you more aggressively? I do appreciate the Docs, they have done many tests on me but why are they being so slow if this needs to be addressed right away, this is so hard to understand, and I am stressed and frustrated! Thanks for letting me cry on your shoulders. Jan

I want to say thank you to all who posted. I think I am still searching- trying to find the right answers. I have been watching the stem cell transplant, Rituxan, and Cytoxin as possible treatments for me. I have spoken to my Neuros about it and they are just not budging. I don’t want to wait too long and then be told that if I had done it sooner it would have worked better. BTW: I have learned about all of the above treatments from this site- not from a doctor. Anyway, I thank God for every one of you. I will always be grateful for all of your posts along the way. I am at a crossroads, I think. Do I except where I am at with this cidp or do I try to get better…and better…

Thank you Catherina, that is definetly a spirit boosting talk if ever I heard one. thank you so much!!! 😀

Thank you Homeagain….. she has agreed to Treatment, for now… and in hopes of going on a new maintenance program on Saturday’s… We have an evaluation on the 18th and I we will talk extensively with the Neuro about new maintenance schedule once we get this relapse in order.
Our closest support group (that I know of) is 3 hours away…….
I am on vacation this next time they meet, but I think I am going to take a road trip once the next meeting is announced.

We live in Lunenburg, MA this is about an hour and half directly West of Boston…

We travel to Boston and Waltham (only one hour away) for Visits and Treatment, depending on where the Doc is on that day.

Dick, thank you so much, her talking to anyone is really hard. she has not resolved to the fact that this is perminent. And that relapse is possible. I am working a little every day on her her symptoms will ultimately make her return, but I would rather it sooner than later.
Thanks for the support..
PS. and no she is not on anything other than IVIG.. She has decided that She is too young for the steriods and the side effects that come with it… We were also told she coudl have one or the other not both at the same time.

Thanks to all of you who answered. I will have to do some research into the stem cell replacement or Cytoxin infusions.

Thank you all very much for your replies to my post about my son.
He is doing well & while he still can’t walk he has made some progress sitting up on his own & reaching for things.
I see that I will have a lot of homework to do regarding his future immunizations.
Our next hurdle is getting his physical therapy started. The program that will provide for it is supposed to be very good, but it’s taking forever to get going. In the meantime we are watching him like hawks for any sign of recurrence.
Thank you again,
Best,
Dee

I can’t tell you how much better I feel after reading these posts.

I had (ignorantly) googled “how painful is a spinal tap” and got all sorts of scary answers and paranoias in my head. Hearing good and positive results from folks on here I feel I can trust has helped to resolve much of that fear.

I do plan to take a little ativan that day however! 😀

Also, very good to hear confirmation that this particular doctor seems to be on the right tract. As I mentioned, when I made my initial appt it was for a simple trigger point injection for neck pain and all of this took me completely off guard.

In the event that the spinal tap shows normal protein levels what is the next step? Blood work so far has been normal so up to this point we are just working with the abnormal EMG and nerve conduction tests along with absent reflexes, and clinical symptoms like the weakness, numbness, pain.

Would one go on to a nerve biopsy or just assume it is cidp and move on with treatment?

That opens up a a whole other slew of questions…

Is there a file somewhere for a newbie on how to know the best course of treatments and all? I see posts regarding brands of IVIG being better/worse, dosages, rates of infusion, it is all greek to me. Is there a ‘treatment for dummies’ thread somewhere so you don’t have to repeat it all for me?

Thank you again for all of your support!!! I will certainly let you know once I get results from the spinal tap which is scheduled for Aug. 30th.

As a side note: I have made a concerted effort to not carry my toddler much at all and I quit using a purse of any kind or carrying bags on my shoulder. The neck pain continues to be quite bad. I keep attributing it to my tmj and clenching my teeth, but should I keep pressing for a trigger point injection just so I can get some relief from at least one issue?

Thanks again,
Erin

Thank you all for your reply, I had 2 EMG, 1 early on, about a year before my
dx, and 2 ncs, I’m checking into getting the results of the latest test but I
think they were o.k.. I definately have had all the symptoms which were
beginning to improve with my IVIG treatments, until my insurance co. stopped
them. Now that I started them again, I’m hoping they will help again. I have
never had any biopsy done or spinal tap or l/p. All I know about my blood work is in the beginning when I wsas told I had this CIDP with anti-mag,
my anti-mag which was suppose to be around 2,000 was 13,000 and my
white blood count was low. Its hard to remember everything, however, I tyhink now its o.k. Thank you all, sorry for my typing. Bless you all.

Judy

Dear Brandy and Jessica:

Thank you for your support and kind words, it helps immensly. As a divorced mom who has always been my daughter’s primary parent it helps to have this forum, friends and support as often times we feel cut off from the world and have no one to speak to.

I will keep you posted as to her status.

Cathy

I have tears in my eyes right now knowing there ARE people out there that understand where I am coming from. I feel so out of control sometimes with myself not knowing the whys and not knowing if anyone understands, particularly when I am reluctant to ask the Dr. anything anymore. I feel sometimes that I am the one a little nuts. But it is not nuts, when you are staggering, have loss of balance, you don’t feel parts your lower limbs, have loss of taste, trouble swallowing and loss of hair and now a new problem, a low heart rate. Give me a break. I know there are many people with a lot worse problems but I guess I had hoped for some answers from the Dr’s and I don’t seem able to get any reassurance of any of it. Thank you again.

Thanks for all the encouragement and information.

After my initial GBS diagnosis, I had five treatments. When my symptoms returned I had three more When that didn’t slow my decline, ended up back in the hospital where I had five plasmapheresis. Then three weeks in a rehab hospital .I’ve been home since May 13 And getting two OT and two PT sessions during the week. Luckily my step son helps me do my exercises every day

I will check to make sure the prescription matches the dose and brand. And watch for side effects too!

Cathie
I appreciate you responding to my post. You had a much worse case than my daughter. I realize in looking at the possibilities, my daughter’s recovery so far has been miraculous. You and others have had a much tougher recovry. It had to be very scary. My heart goes out to you. I am a teacher too (early childhood). Teaching can be stressful as it is and as a high school teacher you are on your feet the whole time. It has to be a challenge to plan to return to work and deal with the exhaustion.
My daughter is a junior in high school. She returned slowly at first, attending only a few classes and then went back full time. I was on a family medical leave for about 6 weeks. It was a tough year academically for her to get sick. The Junior year as you know seems to count the most when applying to colleges. You are so right about it being hard to be patient as a teen.
At this point I am just grateful she is as good as she is. Thank you for your suggestions as far as the medications. I will pray for you to return to good health.
Thank You
LindaNY

Thank you all so much…you are very kind and very helpful. We have to be patient….Getting Better Slowly!!! I like it!!

Thank you everybody for the good wishes.
ethorp-Yes ,it is an autologous SCT.
homeagain- Im sorry you couldnt make it for the trials. I was lucky to qualified and that the insurance agreed to pay for it after a little battle with them.
I will keep you all posted of the whole procedure and I’ll keep the blog so that other people doing research can find it,the same way i ve found others.
So far I ve been here almost 3 weeks and had a lot of tests done.
Tomorrow I’ll get my IVIG treatment as usual every 2 weeks at the outpatient center and friday I’ll be admitted to start the first round of chemo.

I’m excited about the final results.

Thank you again.

Rossana

Thank you everyone for your questions, prayers and concerns. They said that it was a gene mutation as they have ruled everything else out and that it is such a rare mutation that they are 20 to 30years away from identifying it.?????????????? They also said that no doctor would ever consider wiping out her immune system or doing stem cells as she has an active virus and therefore it would be too risky and no doctor would take on that risk. My son has said that he would be happy to give his sister stem cells and then there is the possibility of another baby and cord blood. What a crazy thought, but desperate times bring about desperate measurements. They also said that if it is a genetic thing and a recessive gene of mine and a recessive gene of my husbands that we could produce another child with the same problems: cidp and arthritis. Is this all crazy or is it me? We are getting into territory here that I no nothing about. Genes and viruses and immunodeficiency. The Holy Spirit lead me to ask about the pcr and the doctors never thought of it. I told them that I am not that smart to think it up on my own as I am just a mommy of a little girl. Something beyond me was at work. Why didn’t any of the doctors think about drawing this before now? I cannot help but wonder if there are people out there, even on this website who got a virus and it lead to cidp. If they could not get rid of the virus for whatever reason, then GBs could turn into cidp. The info I have read says that when you don’t fight the virus off that you do not get the fifhs disease rash and if you don’t get the rash how would you know if you ever had it. I feel like everyone should be tested. When I googled Parvo B19 and neurological problems, there is a definite connection between Fifths and neurological problems. Parvo B19 is the medical name for Fifths. Laurie, the new gal on the website, her sons cidp was caused by Hand Foot and Mouth which is a virus. I think we are all on to something.

Thank you so much to all for the good wishes. I am very excited about this opportunity and I will keep everybody inform of the progress , the same way others have done.
We are all pioneers on this ….From Jennifer,the first person that had this treatment 5 years ago,who has been an inspiration to all of us. Alice, Jim, Kevin, Bobby…all have been through this process before me and I have learn a lot from them too.
I hope that with our experiences, this treatment can be available to all of those with CIDP in a future ,not too far. That more doctors will be interested in following in Dr. Burt s footsteps. He is the one we have to be thankful for and to whoever you believe in as a supreme being or force for guiding him.
For all the time and effort he has put into finding a cure for us. He is not only a geniuos (like my doctor said) but an inspiration to other doctors.
He and his team are the greatest.

I will answer any questions you may have and help or talk to anyone that needs it. I have been through a lot in 14 years of dealing with CIDP.
Just learn a lot about your bodies, medicines and doctors. It will help you a lot on this journey.

Rossana

To every one . I cant wait to go and be off all medicines.
Like most of you i have had Pheresis,many times. at least once a year for the last 6 years. I have been on prednisone and cellcept since 1998 and IVIG since 1996 every 2 weeks. We were going to try cytoxan,but my doctor didnt want to ,so we tried the highest dose of cellcept that you can take plus all the other ones and it worked. So I’m up and running again.

First my insurance said that because is still under study they wouldnt cover it. Then because they only cover transplants that are done at the Mayo clinic. So ,I went to the Mayo Clinic and they said they dont work with that protocol (which we knew NWH is the only one) I asked the doctor to write a letter or include that on her report. She did. Then sent all my records again with a letter of appeal to the insurance and to my surprise and everyone else’s they “made the exception”.

That s the short story. Lol

I hope everyone can get this done as soon as possible and not have to wait 14 years like I did.

I will create a blog where i will post regularly about my progress and i will post it here.

Thank you everyone.

Rossana

This is very insightful, helpful and eye opening. All I know about the dosage is that I get 30 grams of gamma gaurd. The first time was for 5 days and this last time (2 months later, 5-6 weeks of feeling worse), I received 3 days of 30 grams.

[QUOTE=Dawn Kevies mom]Theoretically speaking, the max that ivig can last for anyone is a month and a half. This is a basic concept. It only has a six week life at best. a 2-3 week half life. At best means in the best circumstances, that your body is not using it up faster. My 13y/o falls into that category, it sounds like you might too. Are you saying that YOU feel good for 6 weeks or is that a statement your doc made? If you feel good for 6 weeks, it is important to relalize that you have to stay ahead of the game. By the time you physically feel worse or tired, etc. the process had already started a week or so previously (demylienation) For ourselves, we did monthly treatments to stay ahead. Staying ahead is the only way to allow healing. If you wait till the absolute end and symptoms start, you erase any healing that may have started the 3-4 weeks prior. So you will make no gains, only stand still. You would need to sit down and figure out when you start feeling symptoms and make sure your treatment sarts 1-2 weeks prior. Your doc could be in a big shock if you figure out you need it every 2 weeks!!! Everyone is different and it will take a while to finesse. You have started the process, you already know 6 weeks is too long, the next progression would mandate monthly and see how it goes, then maybe every three weeks. Only time will tell. Another consideration, if you get to the 1-2 week need at a 2g/kg dose and still do not get results, you may have to explore other options such as ivig w/steroids or ivig w/pp or imunosuppressants or maybe even cytoxan. There are progressive protocols to follow. Each option is usally tried until the ideal one is found for you. Are you getting the standard 2 grams of medicine per each kilogram of weight? If you need help figuring out the dosage, let me know? Keep us posted and seriously consider a new doctor. If you really want to rattle him, you could mention that being younger you still have an opportunity to change this around because you still have a thymus gland (until age 50, then it strts shrinking to nothing) it is what regulates t-cell regulators. If you modulate w/ivig being younger gives you the best opportunity to encourage the t-cell regulators to do their job. While puberty is the optimum age, there still is a fighting chance before it starts to disappear more.[/QUOTE]

HI, thank you both for this wealth of knowledge. We have great insurance, however they are very Picky about having this done when there is not a neurologist in the building (side effects they say). Unfortunately we do not live near the city where this is done so it is two whole days out of our lives each time, 1.5 hours there and 1.5 hours back and we have to alot 5 hours for infusion as sometimes they have difficulty with the “stick”. Yes they told us the headaches are caused by her dehydration. And yes the Tinnitus was post headache, good to know your story. Gotta love those…AARGH! Thank you for the anemia tip, we have a GP appt. soon I will ask for blood work on that one, The ringing is strarting to subside, we go again for treatment on Tuesday. yes we miss school, we are on a 504. We have applied for tutors unfortunately she is in honors classes and no one is stepping up to the plate to do her tutoring.. ARGH again!
How long before they got you a port? I was wondering about that. They blow the veins in her arms all the time and it is frustrating when we have an unusable arm because its not healed properly in time.

thank you both so much for responding, it is nice to finally hear someone elses story. We feel all alone out here. We are in Massachusetts.

Good luck to you as well.
I’m sure this isn’t the last question.

Thank you for replying Kerwin. I’m dpressed right now so my brain won’t think properly to type. Good luck to you

[B][COLOR=”Purple”]Hi Lameka:
I wanted to take it for energy. Does your friend have CIDP?
As many of us know, not many neurologists want to talk about alternative supplements. And unfortunately, CIDP is so surreal that not many naturopathic doctors know what supplements we should or should not take.
May 2010 be one of your best!
Lyly[/COLOR][/B]

[B][COLOR=”Purple”]Hi Deb:
Thank you for your response.
Best wishes.
Lillie[/COLOR][/B]
[COLOR=”purple”][COLOR=”Purple”][B]California[/B][/COLOR][/COLOR]

Thank you to all who suported me and understood. I too wait as long as i can before reaching for the pills. Taking as directed so as to keep my clean date. Something that is soooo important to me. I do know from my medical back ground that addiction is in the genes passed on to our children. I also am 2 credits and my internship away from being a Drug and Alcohol counsler, also working on my MSW for my major for counsler. Even if i can’t spell! I am blessed to be smart as a whip. This management of our CIDP can at times be the best of challenges and can be won. For many years I could not walk or brush my hair, ect…..I too rewired my brain, from bed, willing and telling my limbs that they were healthy. And one day I could move my thigh muscle at will. What a day that was! I proceded for many years to will myself into the brain network and to this day know that what i tell myself has a lot to do with what I can actually do. So for today i must tell you all good souls; it was a golden day. I actually cooked, went to the Pharmacy (yeah more drugs lol)
and am now filled with a heartfelt love for all of you who understand. Thank you.
Ladyhawk/Cindy

Dear Tara
Thank you for coming forward, i was leary about revealing too much about myself, but God knows if we can’t be honest here about this disease process then where do we turn. I also should have said i come from a family of Doctors and nurses so as not to scare folks off. I also was in the medical profession for 17 years before getting CIDP. After screaming into my pillow night after night from the pain and spasms I cried Uncle! See I tried neurotin, prednisone, take IVIG all the time (which helps) but to no avail. The return of the eating green monster on my nerves seems constant these days. Must call the new neuro at my IVIG place who now handles my case. For more than six months out of the year I am in extreme pain…..So my medical and humane side tells me my higher power did not expect me to suffer in this fashion. The recovering person in my head says this is taboo, but i have come to believe that truly if we weren’t in recovery; would we even be having this conversation? The answer for me is no. I will not live like a wounded animal screaming in the night for someone to shoot me anymore, so for me I have chosen to take the lowest dose of hydrocodone I can. The pain management Dr tried slow release morphine and oxycotin on me and I was an over medicated nut…So Tara perhaps this thread was more for you than me, see i thought I was alone. But sister im here for you and I believe we have the right to live with pain free dignity. Alas i hope i spelled things right.
Have courage and get what you only need to manage your pain.
Ladyhawk

Thank you Donna
I am very worried about chemo, I thought that was for cancer treatment only. I have alot to learn about cidp. I am thankful for people like you who understand and are willing to answer questions. I just cant believe how fast it affected me. I did the ivig load dose 10 bottles x 2 days in a row and will have another 10 bottles this weekend. I guess it is goi
ng to get very expensive. God bless And thank you too Rhonda, Ryan Will be in my prayers. I live in Lapeer

thanks all, for your support and thoughts.

i begin my 1st chemo a week from monday– and i can hardly wait…
since i began my interest in this protocol, they have had more people go through the program– they are at 10, and i am #11. their success has only improved. the last guy that went through the program is in a complete remission now, no meds, nothing. they are very proud and i am quite excited.

thank you so much for your encouragement and kind comments – i will continue to post updates here and on alice’s blog. 🙂 sophie

thank you shirley and jdunk–
my partner and i will do our best to document as much as possible so that people after me will benefit… we’ll see how it goes as i’m sure at times i’ll feel too sick to…X

we are planning to do some videos and still photos– but the editing and uploading, etc., will most likely be done afterwards… certainly we will be writing and keeping folks updated along the way.

again, thanks for your well wishes.
alice

Thank-you! Yes! I do agree I need a break and have been resting my mind on other things today. Gosh! A darn hacker in here! That’s not good! And using my posting for it! I hope they get caught! Yep! Pays to be careful now for I think the hackers are out there waiting to get somebodies personal information. Seems like no matter where you go even in your own home on a computer a criminal wants to get involved where you can’t even have fun online! Never a dull moment is it? Well I better get off line. Was checking my emails and then now going to watch a movie! Hugs
Linda H

Thanks everyone for replying. I as many lurk in the shadows every day. I pray the lack of posts is a good sign. We need to look ahead at the new swine flu shot. The last time they had a shot for this many came down with GBS and CIDP. May everyone have a great summer and may Gods blessings be with you (Lakoda)

Thank-you for mentioning the Immunologist! By what I have been told so far I have the Lupus with CIDP. It once was a Neuropathy but then reverted to CIDP which is rare but does happen to only a few with Lupus. IVIG is one treatment and Plasmapheris but only as a last option. They usually try prednisone and Chemo first for it and if that fails then the last option would be these two treatments. I just wished they would go ahead and try the IVIG and get it done and over with. It makes me feel like a guenia pig being sampled on here! LOL! Certain trails and errors! I normally have been lucky with my disease not doing to badly but have had some bad spells but was always able to shake it off. This past year though has been a roller coaster ride! Started right after a spine injury and has not been controlled since. If I don’t see myself getting better after seeing this new doctor that will be my next option. Hugs
Linda H

yes, they will cover it.
yes i can switch w/a pre-existing condition because it is “group” insurance.
and yes, northwestern is in-network with the insurance i seek.

thank you,
alice

I appreciate your input and look forward to hearing what others have to say. I will keep everyone posted on how things go ( not until January 12)
Take Care,
Heather

Thank you to both responses. Yes, it is hard. Devin is such a trooper and it’s hard to imagine that a hospital is a very normal place for him now. Since he could remember, he has had “pokes” and that is the worst part (a port has been placed because the treatments are so frequent now.) His spirits are high each time….but mine are sinking lower each time. I just can’t show it to anyone.

The hard part is just not knowing exactly what this is….they now say there is an underlying myopathy which could be causing the CIDP symptoms…it’s very hard. The anger, the fear…I have all sorts of emotions that seem to be occupying my mind, and they simply won’t allow anything else to reside there.

Thanks to all….I will certainly be on here…I would love someone to even talk with who has a child in this situation, The hospital trips make it hard to keep a full time job, and I am always arranging something for him…so finances are an issue also….it’s a twister of emotional chaos. A friendly voice can make all the difference.

Thank you…to both of you. 🙂

Linda

thank you and my spelling and puncuation not great

Thank you Shirley! Indeed,I’m blessed.”When you encounter fear, consider yourself lucky. This is where courage comes in”.-by Pema Chodron. I was inspired by that saying.

Thanks for all the responses everyone. I really appreciate it…plus everyone’s so supportive and friendly.

Ken, in answer to your question–I’m in NorCal–specifically Sacramento.

Thank you all for the replies. I would be interested in hearing more of your story Linda. Good luck to you as well.

Kazza I find my walking etc. is worse when I am tired. I seem to go through cycles of insomnia which generally kicks off a “flare”. The doc gave me an rx for ativan .5 as needed for sleep. He said it would help the the muscle spasms as well. I’m a little nervous about taking it though. I suffer from moderate fatige and am worried it will worse the fatige. He didn’t rx anything for the fatigue because based on my fatige cycles it seems to go along with the heat. He said that I am suffering from heat intolerance and since summer is almost over I should see my fatigue get better soon.

Hi Gary…I hear you. My current neuro does specialize in neuromuscular disorders however his primary focus is Parkinsons/movement disorders. I think my GP referred me to him because of the vertigo and unsteady gait at the beginning. Vertigo is finally almost gone thank God!

Is anyone else familiar with any other PN that mimics MS other then sjourns (I have no idea if I spelled that correctly sorry!)and CIDP? I’m beginning to wonder if the vertigo I started off with was some sort of virus. I guess I will never really know.

Kelly

i appreciate hearing that– i have had the same feelings you describe.

thanks for being courageous enough to respond–

alice

marjie, emma and kiwi chick–

i’ll take to heart your comments and experience–

i’ll be writing on my prednisone experience on my other post for now on– the one entitled, “i’m going to post my prednisone experience journal style”

and i look forward to your support and feedback…

glad you all are there.
alice

Thank you for the replies.

Kelly, (I’m a Kelly too) Yes I had an MRI of the head and cspine in May 2007 w/o contrast. There were 3 very small “white spots” between the white and grey matter. The neurologist thought they looked microangiopathic in nature. I have not had an LP. Until this test all the doctor’s were telling me I was suffering from silent migraines because I do have some head issues going on like vertigo and weird eye movements that they could not catch on the ENG testing. I honestly thought I was dealing with MS until I received these test results.

I have tried calling the neuro and they don’t return my calls. When I tried to call my GP I found out they are closed for holidays until the 28th of July. So, I guess I just have to wait for now.

Angel…I will check out AMSAN later tonight thank you. As for your question…my onset was in March 2007. I was sick strait through to July 2007 with severe episodic vertigo and the right side of my face was numb…like novcaine wearing off. Both of these symptoms have settled down to just mild daily attacks which I have learned to live with. No medication the doctors tried for migraines has worked. I even tried an abortive that actally made the sx worse. Around the time the vertigo and numbness settled down…muscle twitch and spasms started in my right leg.

Since then I have had 3 very distinct relapses or flares. This last one came on only 30 days from the previous one. So basically my sx list is just growing and growing. Once the relapse/flare is over I am left with all the sx plus the new ones but they are just mild. So the answer is NO I have not felt completely normal in 16 months. I feel as if I get just a little bit more disabled after each flare.

This last flare ended about a week ago or so…and a couple of days ago I noticed I’m having a problem with my right hand. I’m droping things, knocking over things…not really typing well with that hand. Almost like I am losing a little bit of coordination? I could start a new thread and post my sx list if anyone is interested…not sure if that is the sort of thing that you do on this board?

Anyway thanks again for repling.

TTUS

Kelly

Thank you for your kind words. I just hope one day I can feel like I am not a bigger burden on my husband then he is on me. I love my husband very much and I try to act strong like he does but, in doing that I stuff all of my emontions down so deep that when I can’t stuff no more I erupt like a rocket on fourth of july and I end up being mean or short to him in some way. I feel guilty that it comes out that way. When I love and worry about him all the time. What kind of person is mean to a sick person? I have even yelled at him for falling down. I was so worried that he would hurt himself. I just wanted him to be more carefull. Hopefully, with me getting out my thoughts good or bad will help me be a better person and start each day new and accept that I can’t do it all. Thanking for listing to me and not juding me. jaine

I want to thank everyone who has joined this discussion.
I am on medication that help me with my migraines and it has been less frequent that I get them. I now have about one migraine a week. Again thank you for sharing your story. I appreciate it! 🙂

I want to thank everyone for sharing with me on this topic.
It has helped me.
It has encouraged me.
It has given me an extra dose of strength to know that I am not alone. I hope my memory gets better. Today I forgot how to write a check. It made me mad and frustrated. My nerves really started hurting.. I had an anxiety attack. Do any of you have this problem of getting frustrated? Anxiety attacks? Nerves hurting? Today I bought some Valerian and Peppermint tea. It really calmed me down. Again, thank you……thank you….thank you!:)

I want to thank everyone for sharing this with me.
It feels so good that I am not alone.
Thank you from my heart. 🙂

That was the info I was looking for. I am in the process of ruling out things and no MS has not been ruled out yet. The abnormal finds on my NCV is what made me look at CIDP as well.

As this all started out with vertigo, balance and facial spasms I thnk MS is more likely however something is definately effecting my Periphial (sp) nerves.

I’m hoping that the results of the NCV will set off another round of testing including a spinal MRI and an LP.

Thank you again for the replies.

thank you to all that have responded to my post it is great to hear from you and to read all of your posts,my neurologist is the most wonderful man in the world and deals with GBS and CIDP all the time, I had 6 treatments of ivig and now on steroids heavy steroids that he is slowly taking me off by the end of summer. The reason that he and I use the word upgraded me to CIDP is because he states that the steroids are making me get better, I havent had a IVIG treatment since I left the hospital in January 2008, and I am walking and running and I feel almost 90% to what I was in June 2007 before the onset of this ordeal. He is the one that tells me that I well have a relapse and to call right away if I feel any tingling or numbness, the tiredness is a great factor and I try to get 8 hours of sleep a night. I was in a wheel chair for about 3weeks and then a walker for 2 weeks and then a wall hugger, but now I can say that I wear my heals and can dance with the best of them. The stairs are me arch enemy and have gotten some great exercises from my physiotherapist that are rebuilding the muscles in my legs. I wish that everyone could have results that I have had, it truly is a miracle, and I hope that being in this forum with such a wonderful and truly special group of people will help me and my special angels conquer this battle. Thanks again to everyone.:p

Thanks to everyone who responded to my first post. You really make me feel welcome! I can see now, that with your support and God’s help, I’m going to beat this monster.

I just wanted to let you guys know that after reading and reading all the posts on MFS, I called my husband who was there at the hospital. I asked him to ask his Dad about the double vision. We had not known prior to that that there was a problem there. We thought that he might be depressed because he didn’t want the blinds open or the TV on. Now we know (because we knew to ask) that it was due to light sensitivity & double vision. The staff at the long term care facility has asked for more info about GBS/MFS because of the questions we were able to ask. My FIL is the first patient they have had with GBS, let alone MFS. I have been printing out all the info I have been getting here and taking it with me. The staff is asking for copies. You guys have been a blessing!

Michelle

Thank you guys for your words I really appreciate them. I wrote to GPS foundation, I hope it helps me help here.

Is really hard to remember all we pass in the hospital here, all I know is that if I can help that anybody feels what I felt that days I will do anything. My angel wants me to help others.

Thank you for the replies. I have noticed that although we all are struggling with the same ailment we all have differences. But similar enough to know what I am feeling and going through. The “smiley” nickname is from my childhood. My best friend’s dad called me that. I must smile alot w/o thinking about it bc thru the years others have called me that. And although it’s tough to smile about things now, I find if I don’t, I’d be crying 🙂 The right side of my face was affected, but it’s finally let up enough that it’s not too obvious. I’m affected on both sides but my left side is the weakest, from my neck to my toes. My eye movement and Peripheral vision have come back 100% says the neuo. But I’ve had to up the cheaters. I’m gonna ask him about the med gene suggested and make like a turtle and go slow and steady from now on. I was thinking that therapy had me doing exercises 1 hr each day at the hosp. and 2x a week at home and outpatient. So I was trying to get thru the regiment of exercises every day. Seems I’ve set myself back trying to do this. I was in the rehab hospital at the same time a doctor was doing rehab for GBS. Since then, he’s had an article in the Baltimore Magazine “When Doctors Get Sick”. I called his office and chatted a few minutes, he is already back to work. He said he tires easily though. I aked what he did to recover so quickly so I could do the same. He said, “I don’t know why I got GBS and I don’t know why it left”. I thank you all for your input, its great not to feel alone.

Dawn, Gabrielle & Alison:

Thank you very much for the comments.

We do plan to continue our travels. Our first thought was to remain close to the US for the immediate future as I recover and continue to gain strength and then to expand our areas of travel. I’m glad to know that the incidence of reoccurrence is so low.

I will sign up for the website and gather the additional information. Thank you again for the referral.

While I haven’t read all the posts on this forum I would like to make one comment about those persons in our lives who assisted us during the most acute times. In my case that was my wife and daughter. I don’t know how I would have survived without them. Whether I was having a real bad day or just a bad day they were always there to help. I owe them a lot.

Thank you all for your replies. This process is sometimes scarey. Also, I used to think I had a pretty good amount of patience–boy was I wrong. I have learned whole new meanings for patience and limits. It does help tremendously to have this site to go to ask the questions that only people that have lived in this space can answer and feel the mixture of emotions that come with the uncertainty of the future. I have spent most of my life taking care of others and I feel so selfish and not useful now because there is so much of this I cannot do.

Once again, I hope that you all have a blessed holiday season with people with whom you share love.

With Hope for cure of these diseases and for patience until that time.

Thank you to all of you who replied. I’m sorry for us, that we want to sing and enjoy singing, but can’t do it like we used to, or like we want to. But unlike GBSByron, I CAN still whistle. It’s encouraging to know that some of you are getting better at singing and I’ll look forward to the day I can sing again, too! Thanks again.

Thank you for the words of encouragement. I did have 2 sets of chest tubes – the kind that hang out – they did this for my paresis. Both got infected – one with staph that was really nasty. That is one reason I am so hesitant. But it really is taking multiple nurses 7 or more tries to get in a IV line that will not last more than one or two infusions.

lisa

thank you for your words of encouragement. i guess i’m not the only one who can’t sleep 😉

you guys are the best.

i’m going to try (again) to go to sleep.

caryn

Thank you for all your responses I just think tha it is funny that my gp wont do anything for me just tells me that thyroid is ok. But………… my nuero is getting all these tests and answers this is outside her realm of medicine speciality. yes we both agree with hashimotos thyroid have to go to endocrinologist but my nuero thinks that the endo will not do anything for me. this is sooooo frustrating. my nuero is willing to try to treat it but what if it is not that? then what?:confused:

Thank you Valerie for your words, it´s like a warm blanket. i feel lucky because i found this web site and i´ve read all this stories that are like my story, and also gives the extra energy that i need to go on. I visited my physical therapist and she said that my face it was better, that i had almost normal gestures again, sometimes i forget that my face is still little paralyzed until i feel tension in my lips and cheeks, i also try to laugh, is better than cry. today i have an interview for a new job, i´m nervous because i feel that people sometimes think that i´m too serious because of my paralysis. but anyway i´m going to do it, i´m afraid of taking the subway because of the stairs, but everytime i have take stairs, i always think that i´m strong, i´m going to do it very well and most of all, I CAN DO IT. the other day I drove back home because my husband had an appointment and I took the car and drove, it felt so good. it was like driving a bicycle, although I can´t see very well at night I think i´m going to try to drive only in day light. well thank you for reading me. Stay strong Winnie.

😀 Thank you,

All for the great input it has really help, there were many things said that I had not thought of.

Wow! What a wealth of information–i have lots of homework to do, but am so grateful. More information from you in two days than I’ve been able to get in 8 months!!!! I’m on it, and revitalized to proceed–I realize I was really down in the dumps about options. Thank you, thank you , thank you to all of you (new friends) for awesome suggestions. Mom has a neuro appointment on Wednesday, and I’ll send lots of information/questions with my sister to get the ball rolling again.
🙂

Thanks everyone so much for all the great thoughts and advice! I talked to the Dr. about starting him on an anti-depressant, and although the Doc is hesitant, he isn’t going to totally write off the possiblity. We are changing up his daily therapy and his physical surroundings in hopes that might help. There is a construction site next door to where he is and we think he might enjoy watching the action next door (actually, he’ll probably be telling them what they are doing wrong!).

He has had the avig, they actually did it early on. His onset was so fast, (it was a matter of hours that his arms and legs were paralyzed, and within 36 hours it was from the next down) St. Lukes just jumped on what treatments they could. He is now in what they called a “long-term care hospital”. More than a rehab facility, less than a hospital (?) Since he can’t move from the neck down, talk, eat or do any other normal human functions, distraction is limited. he does watch movies and listen to music and likes that.

Last week we had a big emotional setback, my cousin and her entire family of 4 were killed in an auto accident in Cancun, Mexico. My mom and I will be travelling to Arkansas for the services this week. While dad of course logically understands that he can’t go with us, it was still tough on him. And he can’t comfort my mom much and that hurts him too.

thanks again to everyone, i’m SO GLAD I found this wonderful place!!!! 🙂

Thanks all for your advice and concern. I called my neuro this AM who sent me to my primary and told me to stop the metho. for now. Went to my primary who was very glad I came in and said I am beginning a sinus infection. Put me on zithromax and tylenol for the fever and told me not to take metho. until 10 days have passed. My neuro called to check on me and see what the primary said and told me to go ahead and take the full dose of metho. next week. I hope my body does not get as conflicted as the doctors seem to be. Oh well, I just need to sleep and rest and get better. Its one battle at a time. Thanks for your concern.
Linda

Thank you so much to everyone who replied. I can’t tell you what it means to me to read your experiences and have you understand mine. In response to some of your suggestions; The IvIg was not the one with sucrose and I was pre-medicated with benedryl, tylenol and the rate was slowed down. I guess my neuro didn’t want to put my body through anymore stress. I am also taking neurontin for pain and do find it helpful. I feel pretty secure with my neurologists thinking and his conservative approach due to the dangers of treatments affecting my diabetes. And I am learning to accept this condition as yet another chronic condition to contend with. Its just that it is so unpredictable whereas with the diabetes I know what to do so there is a greater sense of control. I was amused to read the flip-flop dilemma as I too want to wear my flip flops and strappy sandles without fear of falling or tripping and its that kind of experience that only those of us with CIDP can appreciate. I have given up ffs for long distance or away from home and I do use a cane when I am uncertain of the terrain. I find the security of it very helpful. What an arduous and tedious obstacle this all is, but I am so grateful to not be alone anymore. Thank you

Thank you for your replies. I know everyone is busy in their own fight.
And, as a father of a child with severe multiple disabilities, I know that easy answers are elusive and often non-existent.

Over the course of the past twenty years, my father has experienced many of the classis post GBS residuals, including pain, fatigue, numbness and tingling. He has learned to cope and has always pressed on.

It is the recent onset of intense itching, skin crawling, and the “wave” of prickling that runs through is body that has us perplexed. This is new to him and it is pervasive.

And, finding a doctor, of any discipline, that will take the time to adopt some sort of strategy in dealing with this is almost impossible, at least in our geographic.

He has a follow-up appointment with an alergist tomorrow. We’ve got our fingers crossed.

Albeit, I am very grateful for your thoughts and ideas.

Thank you,
MrB

i just want to thank you all for the kind words it really means a lot look foward to talking with everyone many more times

Thank you all SO MUCH for your kind words and advice. I will try the reading thing – she used to read the National Enquirer ( !!! ) … but if she likes it..I will read it to her.

We can only get down to Rockcastle about once a week – and I feel bad about that. Last week when we were there we walked into her room and CMT (Country Music Television) was on. Loud! I turned it off as soon as I walked in the room. I think the only person who hates country music more than me is my mother. The nurse was in the room and said “I thought she might like to hear the music” I said “Not country!” So I left a note taped to the TV with the shows she likes and in big letters “PLEASE NO CMT OR SOAP OPERAS!” Like someone said…the nurses put on what THEY want. It may seem like a silly thing to worry about, but I feel bad that she can’t control the TV herself and that’s about all she has in that room to occupy her mind.

Weaning has been delayed yet again. She is anemic right now and the docs want to find out where she is losing blood. So she has to have a colonoscopy and a scope of her stomach. I’m sure that will set weaning back. It’s always something.

Thanks for your thoughtful reply, Ali. Doug has always been the decision maker, the breadwinner, and the one who controlled the situation around him. So what you say makes a lot of sense. I’ve told him and his wife about the forum. Maybe it would help him to see that he isn’t alone in this experience. He doesn’t share his feelings easily, but he might be more comfortable in this venue. I also see that part of life after GBS is developing ways to cope effectively with limitations and slow progress.

Brandy.
Thank you for your quick reply. I feel better just to be talking to someone.
Yes, Bill has had ivig treatment. He is going to rehab 3 times a week and at
this time is using a wheelchair. He is terribly discouraged that the recovery is
so slow. I do my best to encourage him. Right now he is still struggling with
the fact that he has contracted something that takes such a long time to recover from. We will continue therapy both at rehab and at home.
Heartfelt wishes to all,
God bless and God speed
Peggy

Thank you all for responding to my fear about flu shots. My mother said “no” to getting the flu shot . I think we both fear the unknown and it would be a nightmere if the kids got GBS because shot. We still live in fear of someone else we love getting GBS. If we get the flu here at home I will make sure to go to the doctor right away ! I see all those people in line for the flu shot and wonder how many of them will come down with GBS. It is sad that many people do not even know about GBS to this day ! I know when mom got it we all raced home to research GBS. I had this urge to hand out papers explaining symptoms of GBS to all those parents in line for shots.
Thanks again, Jodi

Hi again!

Thanks for the Welcome Back.

Hope all is going well for you

crann01:)

I will most definately let her know of all this.

I am not sure if she gets the treatment in the hospital or a private area designated for the treatment, but it is possible I am sure to get it somewhere else if needed.

I just worry so much about her. She now walks kind of huntched over, her legs have now bowed like a horse back rider, she can’t feel much in feet, hands etc. and keeps burning herself with cigs or steping on things and not feeling them. Who knows what she can do to herself and she is only 56 so she is still very young to be this old.

Of course she says the same about me, I am 34 and have horrible RA and move just as well as she does lol. But, mine will hopefully have the right meds found, hers we can’t stop, just can slow it down so i worry for her as much as she worries for me.

I’m just glad our family is so happy spirited. Joking and having fun all the time, it would be very hard if we weren’t.

Thank you so much for the information.

Dear Forum Family. . .
I am ever so touched with your kindness in response to Jim’s
passing.
I am sure his family is in need of the prayers as he left them so soon
and quietly in the night.
The bond of friendship/family that GBS has provided on these forums
is such a gift and I thank you from the bottom of my heart.
Jim is free from all the GBS residuals and flying with the angels!

Blessings MaureenBoz

The ER doctor said my reflexes are fine, so they aren’t worried. The tingling has moved from my feet to my arms and into my fingers. However, I have not had the numbness that usually follows the tingly feeling and I have my reflexes. So…I think I have just been incredibly lucky. Thank you for all the replies and support. May God bless you all.

Hello
Thanks so much for your opinions. The beauty of this
board is that people will share their experience and then I get to decide.
It seems as though there is no option as nobody will give
it to me… that seems like a done deal.
So now I am onto strengthening and boosting the immune system to
stay healthy this winter.

Blessings to all MaureenBoz

I am so glad you all responded! I needed to hear from you. It has helped me. I know everything you all say is true. Sometimes it is hard not to go to the negative side of our situations. Thank you all so much. And thank you Mary Ann for the prayers.:)

thank you all for the information
Hope

Thanks Lee,
You’re the best! That was all information I didn’t have.

Thank you Gene for your quick responds and advice.
I will talk to my doctor and try and get my meds changed and hope it helps me as it does you.
Troy

I thank you all for your input and advice. I feel quite a bit better. I will check the CIDP threads. I do want you all to know how much I appreciate your experience and input. Thank you again and I wich the best for you all and hope I can become as supportive as you have been.

I want to thank everyone for your help. I emailed his Doctor yesterday and he replyed today. He told me whom to call, and he also wants more blood work. I also emailed him Masons diagnosis from his biopsy.

Mason is doing better today. Last night was his first night with no pain. He woke up his head and stomach did not hurt. I am almost scared to say he is doing well out loud, I never know when it is going to hit him. He does have to new complates, He keeps saying he fills like he has a hair in his mouth. I have looked and I don’t see anything. This has been going on for over a week. He also complains his back itches. I am just watching him very careful.

It is hard for me to express my feelings to all of you. We have had a very hard year, when this happen to Mason I felt like I was in a bad dream. I have six kids,only three live with us and a Mother Inlaw living with us. Someone told me the other day to just Praise God all the time. I have been doing it. It has helped keep the negative thoughts of what could happen out of my mind.

I just want to thank you for being here and letting me know I am not alone, If it wasn’t for you guys and Dells Mom I don’t know what I would to.

Thank You from the bottom of my heart

Trish Masons mom

Thank you all for the input and support. Today I have more weakness (it was all I could do to dress myself and get into work) and the numbness has moved past my knees. I am also having awful cramp-like pains in my thighs and calves right around my knee joints. Debating on call my doctor.. I just dont know. :confused:

I really like this site so far. There is alot of information to be had. In some ways I think the more you know the better off you are, but while in limbo for a diagnosis the more info I get, the scarier things seem.

Thanks,
Kelly

Thank you judypaluch, forst, gene and ali for your responses. You have been extremely helpful!
I would love to keep hearing more from anyone else too.

Take care,
Juli

Gene thank you very much I will I did not get it filled as I looked it up and I thought this is not for me.
Just wanted your opinon. You are such a help and know so much.
Thank You Carol

GBS 12-2005

Reflect upon your present Blessing, of which every man has many

thank you guys…..

i feel like crying after reading all your messages….

i really wish to recover…i really want to walk again, so that i can take care

my baby like others mothers do…

i am so blessed i have found this site… because i found my family here…

thank you for all things you have said…it really helps and comforts me..

thank you very much…:)

Thank you Brandy. I pray he will be alright also.

Thanks to everyone for the quick reply to my questions. I knew I had some problem with the shaking, but I wasn’t sure if it was related to GBS. I do get tired at times and maybe I should rest more. Thanks again…Ron

Nancy & Jerimy:
Thank you for your words, it helps to hear from other survivors and supporters. I will keep you posted one day at time I keep telling myself. I was crying tonight and my 7 year old said to me what is crying going to do mommy you need to focus your energy on praying that is better than crying. With that wisdom I will continue to be the advocate for my Dad as Nancy said it best, and I will follow the advise of my very wise daughter. One day at a time. Thank you again for your words. Courtney

Hi Todd, Thank you for replying. I’m glad you have good weeks now. Did your doctor treat you with anything?

Thanks to everybody!!!

I have checked the “remember me” button and expect all my toubles to be over.

Slow but happy,
Flossie