Thanks Kelly and D.U. I see my neurologist this thursday, so I’ll have some info then, but I thank you for what sounds very resonable and likely. Gabriel.

thank u both for responding… yes i know it is a long time.. and it sucks.. i use the washroom when ever i leave the house and have a little case in my purse with extra supplies on me at ALL times…. i have also started taking probiotics as i know there full of good bacteria…. i have talked to my docs and they say that with the variant of gbs that i had this tends to be the case and that its not the first time they’ve seen this but did not really offer any other options to help besides. the Imodium and the injections of ondanzatron…….i eat a very restricted diet no red meat and avoid anything fibrous of gassy…. im also lactose intolerant so no milk or milk products… im getting very tired of planning my life around um uncontrollable bowels and the constant tummy aches …:( im sorry im sounding so negative today… I think its just one of those days

I think the doctor said something about contact dermatitis. He put her on steroid cream to clear it up and the he didn’t seem particularly worried but I was wondering if it was a common side effect to the IVIG or something different. Thank you so much for your help! It’s such a relief to know that she’s going to be alright eventually! When my mum came off of the IVIG she had a head ache, stomach ache and was really tired. When (I’m being possitive 🙂 ) the treatment works and she has to go back and have another session on the IVIG will she have to go through the same after effects or will her body get used to it? Sorry again for all the questions.

thanks for the support. 😉

It has been over a week since I was due Rituxain. I have started the pred taper, coming off of 10 mg, over the next 10 months. 1mg monthly.
I have had some numbness and tingling in my feet. It comes and goes. Been working harder than a cat climbing marble. exercise , walking, could hardly wait for today, not going to work it on a Sunday..
thanks again for your prayers and support.. I will keep you informed how I do..
peace and strength to ya..

Thanks everyone for the replies! I didn’t see any at first, so I haven’t checked this for awhile.

I’ll check into the doctor in St. Pete…that’s close enough for me! I’ll pm blake to see how the appt. in Houston went.

Thank you so much Yuehan, the questions you presented are ones I never would of thought to ask! I wish I could somehow fly you to St.Louis and
take you to my appt. with me!! You’re a gem and sooo smart…don’t mean to
give you a large head on your shoulders but some of the people on this forum
have been so helpful and supportive. Thank you Katy for your encouraging
words, I don’t know about anybody else but I think I get most of my strenghth
from hearing all of your stories, the unbelievable struggles and pain we all share
and some more than others and the strenghth we all somehow get from sharing
our feelings. Today, I’m happy, the sun is warming my heart and soul and I’m happy.

God Bless,
Ms. Judy

Thanks for responding. Homeagain — I skimmed the website you suggest and it has some interesting info; I’ll go back and read it more carefully. My internist had mentioned that he thought my skin issues were similar to those of diabetics, but that the mechanism causing the blood to flow away from the surface capillaries was probably different in a GBS survivor than in a diabetes patient. My quick reading of the website suggests that diabetes can attack nerve cells, so perhaps there is more overlap between diabetes-induced skin problems and GBS-induced skin problems than the internist thought.

The weight gain would be Great.

Hi Rhonda, and thanks for the reply. I sincerely appreciate it. You’re right about over doing it. Yes my heart beats 60bpm now and it hasn’t done that in thirty years or more. Sooner or later down the road I will probably have to go on Ivig. But Plasma Transfer was so affective in improving my swallowing that I’m afraid to get off. When I’m well, I do feel strong a few days after using the PT. It’s also only a matter of being in the hospital for two hours. Ivig would take at least 5-6hrs for me at present. I live six hours, round trip, from the hospital that is treating me, so if I go on Ivig there it would mean getting home near midnight. It’s just the way the buses run. I realize it can be done at home. Not sure if my insurance would cover the procedure in that particular way. I have to look into it. All the best.

Thank you. It is what I thought from the material and from brousing the site, but nothing is better than getting the information from someone who has been there.

BTW, I saw my neurologist, and he told me that I have CIDP. He will be working with Johns Hopkins to see what the best program for my needs is.

yes it all helps. i do know my limits…well…to some degree. i try so hard to not overdo it but i am an overdoer by nature. i am not used to not being able to do everything all at once.

i do rest on the weekends and try to recharge. i go to bed early during the week since i get up early. i am take a b-12 along with other vitamins.
i will talk to my doctor about the other meds next week at my appointment.
thanks again.

Thanks for the compliment! I have two kiddos counting on me to stay positive, and by the grace of God my life was saved. I feel blessed! 😀

thanks for the great advice : ) i find it difficult to determine when the ivig starts and stops working because my cidp is the slowly progressive not the type that flares–anybody else with this type and any suggestions on how to determine the ivig schedule? Lori

thank you–glad to hear these tingling sensations are normal : ) i prefer the feeling of tingling and even pain over the numbness. the prednisone increased the numbness and weakness–so these feeling from the ivig are much better. nice to know –the info in your post about the numbness was interesting–i didnt realize that was a good way of measuring things with this strange unpredictable disease, Lori

thanks for the info–definitely helping me make up my mind. I’m still going with the plan of ivig every 6 weeks until february (my next Dr visit) that is when i need to make the decision regarding pe. IVIG is pretty simple for me,good veins–no side effects—so hopefully the pe wont be too bad if its needed..Lori

you just said everything my dr said yesterday–so yes it helped : ) she basically said all of the hassle of the pe verses ivig—and she isnt finding the pe to work any better. appreciate the response–thanks

I take tylenol and Benadryl before the treatment but that is all. I will try taking more of it to see if it helps.
Thanks for the help.
Liza

Thanks for the supportive comments! I appreciate them, as well as the thoughtful suggestions, I really do!

It’s been a couple of weeks; my rheumatologist DID approve my short-term disability, and happily surprised me when she put down that I’d need at least 1-2 MONTHS off, instead of 2-4 WEEKS off! Made me happy…not my boss, but who cares about him, anyway?!? :p

I’ve tried the Savella for a couple of weeks, and had been on the 100mg “top” dose for about a week, when I realized it was causing more problems than it seemed to be solving. The worst, especially considering my current diagnoses, was insomnia! Imagine…a drug that’s supposed to help Fibromyalgia and Chronic Fatigue causing insomnia…and it’s listed as a “common side-effect”! Everything I’ve read says that proper sleep management is one of the most important things in dealing with these illnesses.

I’ve started water-aerobics, and am starting an MBSR (Mind-Body Stress Reduction) class tonight. That’ll be interesting! I’ve never considered myself a “Zen” kinda-guy, but hey, all sorts of new frontiers are opening before me! Before long I’ll have dreds, beads, and a beard…sitting on my back porch chomping on Granola! 😀

But, seriously, I’ve made some serious decisions, with my wife’s full support and partnership. I’ll be quitting my job before long…right now I’m planning on letting them pay for some “short-term disability” as long as I can get them to; I figure they played a big part in my getting sick, they can at least pay for a little bit of recovery time, right? I’ve also made a couple appointments with attorneys, have sought out some help from the state ADA office, have consulted with friends and friends of friends who have been down similar paths and am trying to glean everything I can from all of them. It seems to be taking a long time, but I’m slowly un-learning the horrible habits I’ve developed over the past few years. I’m becoming hopeful again, and starting to think more positively; I’m considering options that I NEVER thought I’d be open to; I’m slowly (painfully slowly, it sometimes seems) learning to relax again.

I probably won’t be around here a whole lot; I don’t have CIDP, so I don’t want to clutter up the boards, taking time away from those who really deserve your help. But I did want to say again, THANK YOU!!, to everyone who has been so supportive throughout this. There’s still a corner of my mind that thinks that my current diagnoses may not be my final diagnoses, and that something along the lines of CIDP or one of its’ variants may still be the cause, but, for now, I have to put that aside. I’m accepting my current diagnoses as fully as possible, and am going to put all my energy into getting better, or at least as “better” as I can be. It’s a little unsettling that everything I’ve read suggests that fewer than 30% of those with Chronic Fatigue are able to hold down a full-time job, but, that’s just a statistic. One thing I’m learning through all of this is to live in the “today”…I’m going to work towards being able to work full time in a low-stress, non-profit type position; if I find that I can’t work full-time, then we’ll deal with that when it happens. I HAVE to stop my horrible habit of constantly “what-if”-ing everything; it’s the number one cause of my stress.

I will continue to read, and if I feel I have something valuable to add to a discussion, I’ll probably throw it out there. God knows I’ve got a lot of experience with doctors, drugs, treatments, etc.; and perhaps I can help someone else who is still struggling with finding a diagnosis in my own little way.

You will ALL be in my constant prayers and thoughts! I wish only the best for you, and will continue to work as much as possible, from my little corner of the world, to help. Too few know about CIDP and its’ effects; I’m finding that CFS and FM are grossly misunderstood, and they’re “routine” compared to CIDP!!

I’ve been doing some reading, and a powerful quote from Warren Buffett presented itself to me a while back, which I’ll close with:

[B][I]“Should you find yourself in a chronically leaking boat, energy devoted to changing vessels is likely to be more productive than energy devoted to patching leaks”[/I][/B]

With love and hope to all…

Elmo 🙂

Thanks for the replies. I just encountered these pains in the had 3 weeks ago and my knee the last two days. I just talked to University of Texas Health Science and the said the same thing. Uninformed neuros cause a lot of problems. God Bless

This is great information – thank you all so much. I am trying to get coverage under immunodeficiency but waiting for vaccine challenge results. But these will help if have to try it myself. Its so very expensive but literally you can’t put a price on your life so we’ll find away.

Thanks again to all!

For all the kind words and suggestions..and just the feeling of not being alone!

I’ll check with the foundation and all other options.

Jessicah….I also had “mild” GBS, but from a virus..back in 2004 w/ a relapse in July 09..and your right about the muscle weakness. I guess it is more of an aching with intermitent sharp pains than weakness since I still seem pretty strong. It’s really more that I have initial strength but no sustained strength for more than a few seconds without pain.

Pam..thanks for the reflexes info….I’m not putting much stock into that opinion either! Especially since my reflexes seem hyper..and that can’t be “normal” either!

I just don’t understand why doctors (specialists) that are supposed to know about all this..don’t know about all this! Thanks again to all of you for your great info! I’m sooo happy I found this forum!! The advice and encouragement in this “scavanger hunt” are invaluable!!

I hope you all have a sparkling day!!:D

Lori

Thanks everyone, all good information.

I’ve never been great at eating properly, but now more than ever, need to really pay attention to it. As weird as it sounds, having just made that last statement, I’m not a big proponent of “supplements”…I’d rather try really, really honestly to eat properly and get the nutrients in their “natueral” states. But, I understand that sometimes your situation is such that either you just can’t get enough through diet, or other things work against your diet to cause vitamin/mineral depletion.

Interesting what KT said about her “claws”…I’ve noticed something very similar. What I’ll call my “home position” for my hands…where they seem to go if I just let them relax, has changed since all this started, to where I often look like I have “wicked-old witch” (or I guess “Wicked-old Warlock” would be more appropriate) hands. My fingers also argue with me quite frequently now…I’ll tell them to straighten out and they’ll fight me all the way. Kind of like having teenagers all over again! 😮

Sent a note off to my neurologist, but don’t really expect to hear anything back. She’ll probably wait; she’s trying to get me in to see the “wizards” at the U of Utah Neurology Department. If she can’t, I don’t know who could…she actually teaches in their department but works for a different hospital, so maybe there’s hope.

Thanks again for all the input; I truly appreciate it all!

Elmo

Thank you, Ken, for taking time to write to me.

I’m actually waiting right now for approval to go to the only neurologist in the state of Utah that does skin biopsies for diagnosis of neuropathies. His name is Gordon Smith, and, as is my luck, doesn’t take my insurance. But, I’m supposed to hear back this week on when an appointment can be arranged, then start the battle with the insurance.

I knew I probably didn’t/don’t have Fabry’s, but was interested in what is associated with SF neuropathies.

Thanks again,

Elmo

[FONT=”Comic Sans MS”][COLOR=”Blue”]I would like to thank everyone who replied. You have given me a lot to think about. I am I Cymbalta, trazadone, and morphine MS for pain. One of the problems is that I have a high tolerance to both meads and pain so things can get interesting. During the day the pain reminds me that I’m alive and that’s not necessarily a bad thing. At night, well let just say I would rather be sleeping that constantly be reminded that I’m alive. :rolleyes:

Again, thank you all for you time and courtesy. We are all in the same boat and it is nice to know that you can reach out for help when you need it. Hopefully I’ll see some of you in person at the next convention.[/COLOR][/FONT]

Thanks, everyone…

I guess it’s somewhat comforting to know that you’re not the only one that things are happening too, but in a twisted sort of way… :rolleyes:

Had a couple of skin biopsies done yesterday; won’t have the results of those until next week. Have another brain MRI today; again, won’t know the results until Tuesday. One good thing about all this…my ENT is much more willing to run certain tests than my last neurologist was, so…I guess I’ve found a doctor who I can maybe go to when I need a test run. Kind of a roundabout way to do it, but you do what you have to, right? It was also interesting to hear his opinion on another MRI; the neuro’s to date have all felt like the MRI from 18 months ago was an adequate source of information. He STRONGLY objected to that…said that with the type of symptoms I’m having, and how quickly they’re progressing, that repeating it every six months for a while would not be unreasonable at all. Taking my old films in with me today and going to ask that they be used as a comparison.

For those with vertigo…I’ve had to deal with it for about nine years now, and would like to offer a couple things I’ve learned. If it’s fairly minor, (to me minor means you can get out of bed) I like to start with antihistamines. Most vertigo meds are just really strong antihistamines, so sometimes a “standard” dose will help, won’t put you to sleep for eight hours, and won’t dry out your mouth too badly. If I have to elevate from there, I usually take Meclizine. One thing I learned a long time ago…if you need to take a strong vertigo or travel sickness med….take it at bedtime, and it usually will still be working the next day, but you’ve already slept, so you’re not quite as drowsy. Another important consideration…as we’ve talked about in another thread…HYDRATION!!!!! I’m convinced that whether vertigo is a physiological problem or whether it’s nerve related, drinking lots and lots and lots of water helps!! What I’ve been told, and verified on a personal basis, is that drinking a lot of water helps by keeping fluids moving. Kind of a constant replenishment system, or recirculatory system. Do you want your body trying to “reuse” the old, nasty water that’s been in your body for a few days, or do you want it using fresh, clean, re-charged water? 😀

Thanks again, and I’ll keep you posted. Seems like things are “happening” right now after a lull in all the testing, etc. That’s good, but it also makes me realize how I’d like to just KNOW what is going on so we can move on to a better, more adequate, treatment regimen. But, I’m getting there, I think. Slowly, little by little, I’m chiseling away at all the “what-ifs” and objections, and the final product is starting to come into view, I think. At least I hope so…

Elmo 😎

Thanks for all the imput. Ran into my Infsion nurse today. We had coffee..seemed kinda weird for her not to be sticking me with needles…. After 9 yrs you really do form a bond with these people. I asked her about the sub q . She said there is only one patrient in town who has started getting it with good results. Apparently it has already been discussed as to wether or not I qualify to receive it ( some times canadian medical can be a pain ) She thought it would work for me.. so off to the Dr. we go to get him to fight so I can get it. I am excited Julie that you figure it has improved your quality of life soo much..maybe I could get a life back that is not interrupted every 6 wks for 2wks. Hard to work hard for relation ships etc. But you all know the drill. Going to look into the chemo drug as well.

I just wanted to say thanks to all of you who replied. I guess my first post was a bit confusing – I was affected on both sides and find that I am recovering in reverse order from what was affected. My hands are back pretty well – the feet and legs not so much. That will come with time, I am sure. Again – Thanks for your support!

Cathie

I appreciate all of your posts. And I should have also mentioned that I really appreciate this website and the fact that you guys have put out your thoughts and feelings about all of this for others to share, because it is truly a blessing to know how others are dealing with this.

I know that I have got to calm my nerves some and know that only time will help, but I swear, everyone is driving me crazy! LOL, we have had a grand total of 2 people to visit the house since he came home and the only offers of help that I have had were of babysitting for my girls. Not to be a “whiny B”, but when my mom made some thoughtless comment – I just exploded with “what part of he is partially paralyzed do you not understand???” This is a highly unheard of illness and people just don’t seem to have any idea of the recovery time for it. People ask about him at work and all I can say is that he is OK. I mean, (what can I say that doesn’t involve a long discussion?) he is alive, but stuck in the bed (which is crippling to his manhood and his frustration is through the roof with the way his body has betrayed him <-- and that is exactly how he sees it - as a betrayal). Patience is a virtue that I promise to practice! :O) On an unrelated note: he seems to think that a heating pad makes the numbness more tolerable (not gone, just less irritating). Since we have yet to be seen by a neuro, is this OK to do or is it bad?? I never heard of anyone talking about a heating pad.

…for all your input and support. It helps.

I am struggling badly with uncertainty, depression, anxiety, anger, drs, the weather, the United Kingdom of munchkins.

Can some sent me $10 million, so I can have a Dr with me 24/7? 🙂 I pay you back in the next life LOL

And organise Air Force One to take me to John Hopkins? Some of you must know Barak, or have his cell phone number.

john

Thanks, Rocky…I appreciate the response. If I learn anymore from my neuro, I’ll post it.

Elmo

thank you everyone, i was feeling really depressed last night!!!!thanks for the hugs and response, i know i can always count on you all to understand how we all feel!!! love to all

Thanks for the replies and suggestions here. I’ve lived a healthy, fairly active life for 52 years after the third onset of GBS, which occurred when I was 12. I suspect that experience now makes me extra sensitive to aches and pains, though I know that what I went through last summer was not simply age related. I’m hoping to find information that helps differentiate between “normal” aches and pains and those that may be traced to the experience of GBS. (I’ll check out Dr. Jacobs.)

Thanks to everyone for your info. Rhonda, I knew it wasn’t the child because i had heard that she was in college. No problem 😉

Pam, thanks for you info. I will contact her 🙂

Thank you for all the responses. My husband (52) does really well with IVIG. He takes it for one day over several hours about once every 6-8 weeks. 7 weeks is optimal and by 9 weeks he’s a mess starting to stumble and go numb again. I don’t know why they want to add methotrexate other than because it’s cheaper. The VA has given him a different doctor for every appointment so it’s hard to know what they are doing. Luckily, we started with a private neurologist and got the diagnosis and the treatment plan before we went to the VA. The IVIG is free through the VA so we want to work with them but I don’t like how he’s tossed from doctor to doctor with no overall plan – we pretty much make our own treatment schedule. We are very fortunate that IVIG works so well for him. I’m hoping it will for years but I’m nervous reading that it quits working sometimes and we’re both concerned about some of the IVIG side effects and the potential for infections from blood-borne pathogens. Maybe we should stop the Methotrexate. I think the dose he’s on is insignificant unless they are planning to scale it up which of course we don’t know. It works very well for my friend with rheumatoid arthritis but that’s a whole different beast. If IVIG were to stop working would you go to Methotrexate or to something else? If something else then what? Has anyone ever had IVIG stop working – go to something else then return to IVIG and have it work again? He has about 24-48 hours of feeling pretty bad. He takes Tylenol, Ibuprophen and Benedryl on a 4 hour cycle for the first day and that helps a lot. His fevers are able to be controlled and if he can sleep for about 12 hours he recovers pretty well. It’s a frightening disease and there isn’t much out there about it. Thanks again for the input. I really appreciate it very much.
Angela

Thanks, Homeagain. I guess I’m wondering what numbers you’re specifically referring to…just vitamin levels, or other things on the panel as well? There were some, as I recall, that were very close to the upper end of “normal”, but I don’t think they were vitamins. I’ll have to go back and review. My B12 was through the roof because I take a sublingual B12 every day.

My wife has always been a big proponent for supplements/vitamins, and at her urging, I recently started taking Vitamin D, 2000 IU’s, per day. Hasn’t been quite a week since I started, and was going to go up to 4000IU’s after a week or ten days with no problems. They have calcium in them as well; the label says that it helps the absorption.

Besides that I take CoQ10 and 2 Grams of Vitamin C per day, along with the previously mentioned B-12.

Not on any “seizure meds” at the moment; was planning on trying to get an appt with my GP for tomorrow to discuss trying Lyrica and also getting a scrip for Prednisone until I see the neuro on the 5th.

While these symptoms have been increasing for the past 4-6 weeks, I’m a little concerned about something else. I’ve had several “branch blocks” and radio frequency lesioning done on my lower back, due to spinal issues. About two weeks ago, I had a branch block on my C7 disk. For those that aren’t familiar, a radio frequency lesioning is what I refer to as a “root canal” on your back. They go in and deaden the nerve endings, reducing pain. The “branch blocks” are a short term trial where they use a local anesthetic, inject into the area of the nerve root, and see if there’s any effect. If they get a positive response during two branch blocks, they will perform a RF lesioning. Anyway, I had a branch block done two weeks ago, during which the doctor not only injected the local, but also injected some cortizone. The tremors and pain have been worse since that injection, but I don’t know if it’s coincidence, a reaction to the injected meds, the result of some mistake by the doctor, or a more simple CIDP reaction to the injection. As I’ve read that CIDP is especially vulnerable to injections/immunizations, I wonder about that.

Don’t really know what to do, or which direction to move in. Will explain all this to my GP tomorrow to see what his thoughts are. Any thoughts from all of you would be especially appreciated. The pain travelling down my arms from the C6-C7 nerve has become excruciating. Went grocery shopping yesterday…after about 30 minutes I had to quit, without my shopping completed, because of it. The tremors are scary, but they’re also annoying. They’re in my trunk and my arms/hands. Often feel similar to shivering from the cold. Honestly, it’s crossed my mind more than once in the past week or so that maybe I don’t have CIDP…maybe it’s Parkinson’s. But, it’s my understanding that Parkinson’s doesn’t cause demyelination.

I don’t know. I just want to find a doctor that will take this as seriously as it feels to me.

Thanks for all your help and input. I really do appreciate all of the time you take to respond, especially this time of year!

Elmo

Thank you all for your replies; they’re all very supportive and interesting. One thing that is also interesting is the brief statement made in the paste by Emily’s Mom about pain and sensory CIDP. I’ve been told that my EMG’s have shown primarily sensory loss. Some motor loss in the arms, but sensory only in the legs. And the pain in my arms lately is incredible! Tried taking Neurontin the other night, and remembered quickly why I stopped taking it a couple of months ago when they had me try it. It really effects my breathing…like a real bad asthma attack! That worries me, too; don’t know if that’s just a reaction to the med, or if it indicates some nerve involvement in my lungs and the Neurontin is just doing its job.

Thanks again for your help; I’m looking forward to my neuro appt on the 5th…hopefully my symptoms have progressed enough to get them to sit up and take notice! :rolleyes:

Elmo

Thanks for your encouragement. I wonder if the vitamin supplements I have been taking all these years have made a difference?

My neurologist has always been happy that the prednisone has kept me walking. I’ve never been able to reduce the steroid dosage below 15m every other day. I had my first IVIG in April 2007 and am going next week for a 4 day “booster” IVIG.

I guess my nerves to the muscles are growing even though I have not noticed any outward change. I am excited and grateful to have evidence of healing.

Flossie

Thanks everyone!

I’ve been told that your body has to get used to the meds and I’m sure that’s true but I think maybe Lyrica isn’t for me. I tried the bedtime method and even took it at 8:30 and I didn’t straighten up until 2:00 pm the next day and it didn’t do much for the pain. That was one 50mg pill….I can’t imagine taking 3 in one day:eek:

Jet: The Tegretol sounds good….when I see my new doctor I’ll ask about it….thanks!

Lori

Isn’t this a small world. My doctor is Dr. Sullivan also. I have your phone # and I would like to call you sometime. I’m home most of the time because it is hard to get out much and go far right now being tired alot. Not sure if it is from all the medications I”m on or just will take time like to get back to what I called normal. Sometimes I feel trapped because I wish I had the energy to just go and do things like I used to. I’ve never had much sit in me and to have to sit and rest it is hard. I will give you my phone #616-895-4057. Hope we can get in touch. Is anyone else tired alot with CIDP. Hopefully my next treatment will help me get more on top again :-).

Blessings
Caroline

Thanks to all for writing back!

Also, thanks for the great info….I’ll check into all of it. This forum is such a wealth of information….so happy I found it!!

Lori

Thank you Tina

thanks for the info. I had similar weight losss to hutsky. i am also on max dose of lyrica, and i will now talk to my doc about options.

thank you katyk…

Thank you for your replies. It means alot to me. You are in my prayers too.
Jon in CT

Thanks for all the replies – and the info. Payton is doing fine – I think since the beginning of June she has only said she felt tingling and leg pain about twice. However, this only lasted for a few hours. Of course, she JUST told me her left thumb is tingling…

The biggest issue we are dealing with right now is her sleeplesness – she either really can’t get to sleep or refuses to relax and wants to be where everyone else is. I have researched a bit and don’t really see any meds for young kids to assist (other than the infamous Benadryl). So, we are going to set up an appt with child psychiatrist first to see if there are any underlying issues she might be stressed or anxious about. After that, I will reattack wit the neuros to see what they can do.

She hasn’t complained of any major headaches for a while so we have adjusted giving her the migraine meds until she feels one coming on. We have also stopped the Prevacid until she complains her stomach is hurting – like before.

She is still on prednisolone but we are slowly trying to wean her down, with the assistance of the neuro.

Right now we are basically watching her day-today; school is back in session, she is in gymnastics and she has PT once-a-week. So, let’s see how she goes for a while.

Again, thanks.

liz,

thank you, i will definatally look him up. it is so hard to find a dr who really knows what is going with us!!!!

Liz and Kelly,
thanks for the collection of good ideas.
I will start exploring them tomorrow.
Erin

Linda,

Thanks so much for the information. We live in Aiken, SC so the Augusta doctor is perfect. She has been seen at mcg for the last 3 1/2 years, but they haven’t been able to help with the pain flares. Thanks again, Kim

Thanks to all of the replies. Emma is right in that my job keeps me going. When I am working with the kids, I forget everything but trying to take care of them and help them to be better. I turn off pain and pride and get into a “mother hen” mode. Maybe adrenalin keeps me going; I don’t know. I just know that most afternoons after this, the pain and achiness hit with a vengenance to state that I should have done less. I also know that I deny that something is wrong to myself and everyone else a lot and try to pretend that life is normal. I’ve said “I’m doing better” so much that even I have trouble accepting reality. I am so worried that I will be asked to quit my job and this would break my heart. I am worried that I will not do it adequately. I was able to take a position temporarily for 18 months which had less walking involved and when I did not walk as much, was much better. I have resumed my previous job activities a month ago and am discouraged that the additional walking makes me feel as bad as before and walk as badly as before. I had hoped that there was some training–some strengthening. There is probably some, but I am as stubbornheaded as before. I wish I could learn better. WithHope

Thanks to all of you for your replies and for sharing your experiences. I think I probably am still trying to do too much–but it hard to know how hard to push to keep going and when to rest. My work is such an essential part of my life. I would shrivel up and die if I could not do this–so I push and so I will keep doing so. These kids did not ask to be sick and they deserve the very best that each one of us can do even if it is hard. Dawn, I do use a scooter at work and, at times, a walker or a cane. It was hard on pride, but if it helps me to keep being here, I am okay with that. And maybe, just a little, it might help the kids to see me with assistive devices to keep going. My heart goes out to these teens who need them also.
Thanks to each of you for your support and for how much it helps to not feel alone in this path. It helps to hear that this fatigue and this struggle are part of GBS from people that know. WithHope

thank u helga… i think fiber might be the key… best wishes with everything

Thanks you guy’s for your feed back I plan on seeing my doc next week. I have been under a lot of stress as my husband has cancer and we are doing the chemo thing. I have not had treatment for almost a year and hope I can still hold off cause my doc makes it sound like things have to be worse then they are for treatment. Iam not anxious for treatment it is just hard cause the pain is keeping me awake and my grip is weak and I feel like the crawly feeling is in my mouth I know you guy’s know what it is like to feel like there is a bug in your mouth but can’t get it out. Thanks for your help.
Peggy

Thank you all for your support and help understanding dosing. Even though I’ve been on ivig for 22 months I feel like I’m still learning.

I am definitely going to discuss dosage change with my neuro on friday. I enjoyed only crashing once every week to 10 days instead of having more frequent crashes. It’s one thing to have fatigue and weakness, but another to have a full blown crash.
If I could do without both, I’d be thrilled. If not, I’ll compromise. If that is an option!

but now i have a different fight– it is to compell the city of san francisco to [B]allow me to switch to the insurance group i need and make it effective immediately[/B], rather than the usual july 1st effective date.

i am asking people on this forum to take a few moments to write an email protesting their denial.
all info is provided on my blog: [url]http://www.alicedicroce.com/id14.html[/url]

please everyone, this sort of precedent helps all of us!

thanks, alice

Thank you all for your inputs! Most importantly, thank you for your thoughts and prayers. As of today, my dad is making some really great progress and we’re pursuing a move to tertiary care. Thanks again for the replies!

thanks for all the info everyone…. i think i found a nice solution (thank you carol) i tried rubbing some peppermint cream on my feet frirst, then follow it up with some mineral ice, globs of it….then cover the top of each foot with one of those disposable heating pads, put socks on and go to bed. so far, i gotta say they feel better!! also i agree with you, its important (if you’re able ) to keep moving and stretching to keep as much blood supply to the muscles as possible. what a challenge this is, but im NOT disouraged.!! what wont kill you will make you strong….. thanks again everyone. its nice to know i’m not alone……….. steven

Well, I did not ski.
I went to lunch with a friend and went for what i thought was a nice , not tooo much walk.

I was wrong!
Had a big neuro flare last night with 10/10 pain, and today I am very weak!
I don’t get this disease!

I hope to be recovered a bit by tomorrow, my house is really dusty and dirty, and I’m the hired help.

I really appreciate the feedback of others, who seem to get this better than I.

Have a great day!
Erin

I appreciate the sincere input from many of you! Much appreciated! I will speak to my neuro at my next visit!

Thanks everyone for your response. I wrote my initial post with tears streaming down my face at my frustration over the infusions and it is so comforting to know that there are people out there who can relate and are willing to share their experiences/advice. I am only 30 years old and emotionally this has been just extremely hard to deal with while still being a wife and mother of 3 young children. I started experiencing the issues with my veins when I received a new nurse. I am going to a different infusion nurse on my next infusion but will also speak with my doctor about the port. Again thank you to all of you for your replies. May God bless you all.

Thank you guys so much for responding. I may be putting the cart before the horse as this will be my first visit with the Neurologist. Hopefully he can give me something to relieve the burning knee pain as well as the back pain. I walk quite a bit at work and the pain is beginning to take a toll.

I can ask my employer to accomodate me, but I’m trying to hold off as the pain is not only affecting me at work, but I’ve seriously curtailed events outside of work. I’m very boring these days. 🙁

Hope everyone has a great, pain free weekend!!

Thank you guys an gals I really aprechate help now if i could spell .:D

no– they only speak to its connection to neuropathy. i had shingles only a 2 months before the onset of my cidp– but keep in mind, most likely, i had symptoms of cidp before i could identify them… hence, i am curious.
alice

thanks all for sharing. It helps me to get some understanding abt how fast and slow I would be best to proceed.

yesterday I had a wonderful swim, then walk in a community pool. I was having some difficulty walking before and after. Too bad I can’t always walk in water.

today I woke unable to move much of anything. I crawled to the bathroom, was able to walk back by manually helping my left leg which had gone a bit lame.
I had a series of myoclonic tremors after moving, and took meds and have slept all day. This evening I am still walking unsteady, and am fatigued.

Hopefully, I will feel better tomorrow.

Wishing you all well.

I want to thank all of you for your replies. It is great to know that there is a place I can go to get information from people who have the same problems as I do. You all are great.

Take Care, Susanne

I just wanted to say thanks for all of the well wishes, it sure means a lot! The tidbit on the nausea is well appreciated and something that I MUST try, and if it helps it is such an easy fix. I am little nervous about my thyroid (I also have hypothyroidism)…my physician is not checking it until after week 12…I run low and nothing about me over the past year and a half has been normal…and so I pray that this baby is developing normally and that my thryoid is remaining normal despite the pregnancy changes. If it is not one thing to pray about there’s certainly another. Thanks again…and stay tuned 🙂

Room 679

[COLOR=plum]Thank you all for the good thoughts![/COLOR]
[COLOR=plum][/COLOR]
[COLOR=plum]He is 3 years old and was given to me about a year ago. He was abused so he did have some bad habits before but not anything like last week. After the fact he was put away for almost a week now. I will look into the training school. That day I did have some friends over with small children and the children were making him mad but he was locked in his cage, when I let him out that’s when he attached me. [/COLOR]

Thanks for the info. The prednisone, now 60 mg. starts working by the afternoon, if I take it early in the morning. I went to work yesterday(9hrs), with my cane, had a bad fall (not hurt much), couldn’t sleep last night so I took 1/2 Ambien, and woke this morning not being able to move much, no fingers, etc. I don’t actually have a great relationship with my doc. I”ve been reading this forum since before I was diagnosed (I had an intuition it’s what I had), and she takes offense that I suggest things……….OR question her course of treatment and tests. I am looking into someone else but changing is overwhelming in itself with all this other things I am trying to change. I’m sure you all have been here!

Thanks again!
Dawn

i didn’t realize it was cellcept.
i wonder which is the safest immune-suppression drug…??

alice

had head therapy today very helpful also went to work Anything to try to get my mind off of it. really having a hard time today using my hands. they seem pretty numb.my mom is sick with the flu, trying tp stay away from her but it is a small house.I feel like such a whiner….no wait after the last several weeks even years i guess i can whine a little. thanks for the support, amy:eek:

thank you both for your feedback!
keep in touch–
alice

thank you all for your care and replies–

alice

Julie and Cathy,
Thanks for your great suggestions. I’ve written them down and will follow up on them. I didn’t have the IviG treatments. I have been asking my husband to do most of the driving. I can manage very short trips, but don’t do it unless I really have to. I’ll keep working on it and will let you know what happens.

Sara

Thanks so much for your replies. I read Joseph Heller’s book last week–No Laughing Matter. He said while he was in rehab that he had serious dizzy spells for 3 weeks. He said the room would start spinning like crazy and the only thing he could do was close his eyes. He said his doctors were never able to determine a cause, but it finally stopped. I think Janet is probably right–I believe it has something to do with lying flat for a long while. Maybe it takes a while for the cerebrospinal fluid to rebalance/redistribute.

Thanks also for welcoming me to the forum. I live in a small town in a remote area of Virginia and there are no face to face support groups right here. I’m looking forward to sharing and talking things over with others who have been there.

Thanks for the messages. As I was in labor, one of my first symptoms of GBS was my irregular heartbeat. I have seen so many cardiologists its unreal, but thats the norm with GBS (my neuro dr count is even higher).
My current cardiologist believes that since my autonomic nervous system was attacked, it affected my heart rate, and as the nerves get more myelin and work better, my symptoms will also. The beta blocker was a test of finding the right dose, because my BP would also spike high and low. The moral of the story was that in the hospital, my first incompetent neuro dr thought I was just a nervous new mother, and sent me home even though I told him that I just didn’t feel right. It took a few weeks to get to the crisis point, and I was transfered from cardio to neuro to cardio again-it was crazy! When I was discharged from the rehab center two months later, I was the one to push for followup with the cardio-the moral of the story is that you have to take strong proactive care of yourself, and when you don’t feel right, keep looking for a dr that will take you seriously. Take care, Kim

Thanks. I hope I can meet you at the Symposium in Chicago. WithHope

thanks everyone– and thank you emma for the info– i called jo– very nice woman– we’ll get back to me soon with more info.

also called the foundation and left a msg–asking for neuro referrals…

i put myself back on cymbalta and immediately feel better… so less down but just as sick…

alice

Thank you , Kelly and Emma for your replies. It means so much to me to get some support. I may not have excruciating pain or be unable to walk, but I do have significant respiratory involvement, and it is serious.

The nurse gave me the bag from the first infusion and it doesn’t have a lot or batch number anywhere! I asked her if there was another label that she took off the bag and put in the chart and she said no. The bag does say,, “equivalent to Gammagard Liquid”, so it must’ve been reconstituted in the pharmacy. I am having it at a university outpatient infusion center.

I DID notice that there were a lot of bubbles. The nurse paid no attention to them at all. She was running around like a wild woman as they were very short staffed all four days. So I will be sure to watch that next time!

I forgot to mention that as I was dozing in the recliner, on the third and fourth day I kept waking up with numb fingers. Now I do wake up every day with numb fingers and hands, but I think from nerve compression. This time my hands were just lying there and not clenched or anything. I thought it was a bit odd.

I also noticed that my respiratory rate was elevated during all the infusions, and that I was having a ton of arrhythmias. I am prone to them anyway but never saw them mentioned as an IVIG side effect. There was nothing to be done about it anyway. My oxygen level was fine throughout.

So thanks again, and I am trying not to get too excited about any changes I’ve noticed! Time will tell.
Margaret

for the warm message janet–
alice

Thanks to all of you for your advice..
It is so hard to try and slow yourself down. After not being able to do much for three months to be able to walk to the end of the garden and start to climb the stairs is just brilliant but i will take your advice and take things slowly I wan’t this to work.
Hopefully I will visit the neuro again soon and discuss my treatment plan. At the beggining it was all a bit rushed I got the diagnosis and he was then away on holiday so it was more a matter of get in and get the treatment quick first then regroup and we will work out a plan.. I am still unsure what to expect though is it a matter of the IVIG will wear out soon and you work out a plan of how often you have it or do you just wait and see what happens now after the first treatment ??:confused:
Thanks again too you all
Paul

I look foward to getting know everyone.
Thanks

awesome to hear that other people are into naturopathic healing! I am not deep into it, since i am pregnant, but i have seen it do wonders. I’ve also seen people end up in bad situations by doing only the natural thing. Actually, before i started nursing, i seriously checked into becoming a doctor of naturopathic medicine. Thought nursing would be a more stable career though, so i went with that and love it.

Anyway, i think a healthy balance of all types of healing is ideal. When this baby comes, i plan on a south beach type of diet (it doesn’t restrict good carbs as much as atkins), plus going to the herbalist. i imagine i’ll be taking coq10, fish oil, creatine, etc. I also love the healing foods thing! it’s food, not a pill, so im not as scared of it. My son almost died last year from a bad reaction to a medication (he was laid up for 6 months), so i mentioned to the liver transplant doctor that i was considering “going herbal”, and the doc said that the same things happen with herbs, too. So, i am nervous about any type of medications.

Sounds like you are coming along really well. That is wonderful and i am sincerely happy for you, as well as your family! Im impressed that you got so much done this spring, especially the garden! You rock! About that new thread (what’s gotten better), it hink its a great idea! I can start it now, if you haven’t already done that. I’ll check it out right now!

Take care and keep up the awesome progress!
Jamie

Thanks all of you for your replies and suggestions. It helps to know that others have problems tolerating heat. Sometimes it feels like there is no end to the odd manifestations that come with this illness and it seems so odd when something changes completely in your life compared to before this stuff happened. I have done better in the last couple days with fans and drinking lots of cold GatorAde. Thanks for the other suggestions. I am sure that all will be needed by the time it gets really hot.

Thanks for your kindness to share your stories and suggestions.
WithHope for cure of these diseases
GBS 3/07

I want to thank everyone for their encouraging words.
It means so much to me.
I am going to try to inform her and understand the toll my disease has on my family.

Thank you for responding, I know it’s hard to come by good information and support. :p

Thanks All,

Some days I pretend not to notice, other days I can’t help but notice. One day at a time – that is what I am learning! I did run 10 miles yesterday – I think I can put a check in the improvement column 🙂

Peace,

Tom:)

thanks guys for your thoughts on the matter,
Emilys mum – I am on immunosuppressants, plus pulse methylpred plus weekly ivig. !!!!!!!!

Thank you for your replies. I feel better just knowing I’m not alone in this. I hadn’t seen much comment about it and wondered if I was just “out-there” thinking it was related. Thank you for the suggestions of tea. So far it hasn’t been so bad I’ve vomitted (except during IVIG), thank heavens. The one thing that may have helped some is a liquid multi with trace minerals and lower iron levels (Trace Minerals Research.) They also helped with the fatigue! I haven’t talked to the neuro since I wasn’t sure it was related. I think I’ll call her though.

You guys are the best.
I have very little confidence in ” the system”. As many of you have advised – I’m finding that I have to be my own advocate. It has taken me 9 months to finally receive treatment. Something seems to fall through the cracks at every turn, and I keep waiting.
I don’t mean to vent, but I am soooo fustrated with the medical community. The only thing they seem proficient at is getting their money! They do that quite well. I understand the economics of this disease, and the great cost associated with the treatment. I only wish they were as attentive to the details of my healthcare as they are to my pocketbook. I feel better now!:)

Again, thanks to all.
Charles

Thanks for your response. I’m curious about the blood work and will ask my neuro next time I see him. I’m actually thinking it might be time to try someone new. The thought of having to go through all the testing again is a bit overwhelming though.

Have a great night! Hope you do well w/o pt.
Blessings,
Kristen

I thank all of you for your kind thoughts and wishes. I do feel in my heart that this is CIDP. I actually have felt this was the case for a long time. Dawn says a hard part of this–accepting it and Dick the even harder part of learning to live with it. I feel like I have been ran over by a train, not because of the diagnosis, but because of the process and the impact it is having on my life and career. I thought when I responded to the IV IgG that I might survive academically at this university and then, wham, the next time did so little. And all this nebulousness about the diagnosis and atypical manifestations. It is quite discouraging. To top it off, it is hard to be a health care provider and to be a patient. Kelly is right in that knowing how seldom people with rare diseases act like they are supposed to act in the medical textbook makes it sometimes more frustrating when others argue about what is going on with me being not typical. It is true that this is sudden onset peripheral neuropathy in which there is nerve conduction slowing, bilateral foot drop, a strange gait, lots of fatigue and functional weakness, the process has ups and downs, but it has responded twice to IV IgG, just not the lower doses of this. In the ways that matter most, it fits with CIDP. This does not change, however, the fact that I do not want to have this. I keep hoping that I will wake up one morning and find that this last year was just one bad nightmare and that all these challenges are gone. I thank you all for your kindness and strenght to share your stories with each other to help each of us find a path of living through this briarpatch. It makes it easier to not be alone and to know people relate to what I am going through. thanks Julie, your kindness and humor inspire me and I am tempted to just see if I cannot go see your neurologist at Hopkins!

Has anyone been to the Cleveland Clinic and had a good experience with a doctor there that understands and has plenty of experience with this odd disease?

WithHope (although it is just a tiny glimmer right now).

Thanks, Jerimy, Gabrielle, Carolyn, and Sandie,

I am happy to say that I was just granted tenure and a promotion by my university. What a relief 🙂

Many thanks for your kind thoughts and well-wishes. I am still trying to figure out what is “recovery” and what is “fatigue.”

This group is such a great resource/comfort/help!

Thanks,

Tom

😀

Hi, Thanks for the encouraging replies. Even though I have family support, It’s great to not feel so alone and that there are people out there who know what I’m going through. My thoughts have been, I gotta exercise, I gotta try to get back to my old routine, work, cook, clean. But fatigue grabs me so fast. Reading the posts tells me I’ve got to learn to rest before I can get better.

CD -Yes, MG was brought up numerous times but two tests – one just last month – showed that it was not MG. I was also just tested for connective tissue disorders (myositis, lupus, etc) ….nope, not any of those.

I do still have an good relationship with my neuro. He’s sending me to the local University hospital as he is baffled – but doesn’t believe it’s psycho. I don’t go in until April though. I am in the process of getting my records from my neuro and I have all of the records from my current physician that’s actually treating me (My immunologist).

Kelly – this is the reason dr.s kept saying it was psychosomatic – all of my test results were “normal” until my immunologist ran his list of tests this fall.

We have tried numerous times to get another round of IVIG’s. I notice improvement after the first day of IVIG…but my condition gradually improves somewhat without meds (I follow a strict diet and take massive supplements due to imbalances and deficiencies my allergist found..oh and B12 shots)…
Since October I just can’t get back to normal. I always had issues with my goofy walk (hips/drop foot) but now I just can’t get my arms or legs to return. I say, I”m like a bug with it’s arms/legs pulled off !”

I guess the neuro thinks, nothings broken so we can’t fix it??????

We keep dropping off copy after copy of the anti-mag myelin test….like the neuro doesn’t want to take time to deal with me or they don’t want to admit they are wrong.

It is my biggest fear that this will be “long term” or chronic (HA) or it will get to the point the damage is permanent.

Dawn Kevies mom & Julie – thanks! It’s nice to chat with people that can relate. I appreciate you guys!

Becca

Thanks Dawn and Jan for the reply.
I have had severe limitations on what I used to do, but, am still coming to grips with how to go forward. Last December I gave up my business that I loved so much, and now am giving up things I’ve always done with my kids.
Great advice, Jan on the explaining it, although many think I’m already
crazy 😉 I won’t say anything about it being my nerves!

Thank you for reading my post. It’s very hard sometimes to explain what you are going through to people who don’t have GBS, which makes this place great because you all know what it is like. Everyone means well, but it’s tough to explain what is going on when sometimes we don’t even know what is going on in our own body. I am very lucky to have gone to the doctor when I did, and even luckier still that my doctor knew it was GBS. So please take it easy on those who want to help us, because like us, they too are lost in our body.

Sean

Will speak with MD on Fri. about Alternatives.
I’m also on Arava, MD may switch that one.
Hope you get to drive. I’m not allowed to at present with no reflexes from knees to feet or elbows to hands.
Have you been the PT/OT route?
Are you still on Prednisone?
Thanks for taking the time to reply.

Thanks for the info on CelllCept. Will go and speak with Sam’s, we have one of there stores here.
I’m on 80 mg of Prednisone a day.

Thanks Gene….hmmmmmm..
So, in simple terms ??? 🙂
I’m just lost really….we went from all test results coming back normal last spring, to being told this was mental…to now finding some answers.
I do go back to my dr. in two weeks.

I had the MAG antibody test. This test was done about a month ago – 7 months after my original symptoms began….yet my condition flares up, worse than it originally did.

Becca

Thank you Steve. Somebody said that there is still something that could help people even on the vent to speak, Is that true?

Thanks everyone for the welcome.I like the guitarman’s wife! I will probably have to relay back and forth for him, I can’t get him to use the computer! Thanks Kit for the PM. We did read it.He has got a lot better with guitar playing.That is one thing he can do,so he practices a lot.I told him he has his Chet fingers back! Of course he doesn’t think so. At least that keeps him working at it. We are not involved in any pt now.He does do pt on his own-some of the exercises the home health people showed us.From the onset of the GBS he spent 11 days in intensive care, 3 wks.in a rehab hosp.then about 8 wks.of in home pt and ot.I would like to see into some sort of rehab. again to see if we could be doing more. His bowel and bladder were the first to shut down, then hands and legs. We are thankful it didn’t affect his face or go to his lungs. Looking back, we had never heard of GBS and didn’t have a clue to how bad it could have gotten. Has anyone had GBS to start with their bowels and bladder? That was what our small town hosp. was treating him for. Thank goodness we went on to a city hospital,they started treatment within hours for GBS. and got it turned around .Sorry this is so long!
Have a good evening!
guitarman’s wife

…for all your kind words and support. Still having major ups and downs, and am not looking forward to the holidays. But I’ll get through this evenutally.

Although I haven’t been posting much, you all are in my thoughts. This community has been a life saver for me!

Caryn

Hey Everyone, I just wanted to thank all of you for replying and taking the time to wish me well. My treatment went well on Monday and I have recovered feeling in my feet. Its a miracle…lol…19 and having trouble walking. On my way out of my treatment, I collapsed on the floor and was writting as a code blue. LoL> I needed something to make the day go longer and keep me locked in a hospital. I’m just happy to be home and healthy’ish again. Thanks for the prayers and thoughts. Lots of hope and prayers back. Keep faith, its the only thing that can help us get through this tough battle.
Thanks again,
Many prayer’s, thought’s and hugs to all.
Jenn!

Thanks everybody for the great input. I “cautiously” put my foot in for a couple of minutes and it got a little tingly so I pulled it out! Stayed in the heated pool which was great. Did take a minute for my breathing to level out so I pretty much stayed on the steps, going in and out. (I was never ventilated but my breathing muscles were affected. I still have times when I can’t take a deep breath or talk too long.) The really ironic part was I went into the steam room and stayed for about 5 minutes with no side effects whatsoever; it was great.

I’m in Portsmouth, VA and we are having 90 degree weather with high humidity now but as soon as it gets in the 80s I’m going to start therapy in an indoor heated pool. I’m taking OT now but I get bored easily. (I’m a 59 year old kid!) I’m a water baby so I can’t wait for the temps to drop so I can pool it 3 times a week. Have a nice day.:)

Thanks for the reassurance, he was admitted and they did another chest xray and blood work, the dr. was worried he might become “septic”? in the blood, so he advised us to take him to ER, so they gave him antibiotics and admitted him about 1.30am! thank god we still have fmaily here till next week so my BIL stayed with him last night.

Thanks for all your encouragment and insight.
I do step away from him when I am frustrated, and I know it is very tough for him and he is trying so, so hard. I am jsut venting i guess.

He has home health aids coming in and the therapists too. I think saturday and sunday were just slow days for him and then yesterday (monday) he was great, he even stood up for about 5 seconds and he did it about 10 times! then we went to the dr. and they decided to keep the cathatar in since he has enough to worry about, then wether to pee or not!
He does say he wants to rest all the time, we try to motivate him to stay awake and sit up. But I guess that is part of the syndrome, to rest and let the body heal, so I might emphasise that more.

Thanks for the ideas, Angel and Dawn.
I will look into school PT, but right now she only has that temporary kind of iep–I think it is a 504? We thought that was all that was needed when we set up, as she was able to keep up with school work on a reduced schedule and mostly just needed assist getting around in the wheelchair (ie, someone to open doors, etc). At that time we ALL thought she would be either totally recovered by now or close to. She is getting better, but–not where she or we want to be yet. We are trying to take one day at a time. But school is looming!

I didn’t know school district might offer PT but someone else recently mentioned that they should. But I wonder what kind of knowledge their therapist would have re: GBS? We like the PT we have, she has experience w/ adult GBS and has been very good. Maybe we could do both.

Well, you’ve given me things to explore. BTW, the insurance co told my husband that one of the reasons she was denied was because she can walk ‘up to 400 ft’ with a walker. So they don’t really consider her ‘severely affected’. Grrr.

Thanks, Dr. Shawn, for the good advice. I am a 22 hour drive away from my doctor and my right foot is numb. So seeing him is out of the question at this time. I tried getting a doctor up here and no one will take me as a patient. Not even for cash. My Humana is not accepted except for emergencies in an ER or hospital admittance. So I am on my own for now. The hypertension started with the GBS both times I had it. I have had twenty years of normal blood pressure between the first and second GBS. I did have one excellent doctor and his nurse will not let me make an appt because I am a “new” patient since I wasn’t in to see him in 7 years (taking care of my mom in FL,) Yet he said I could have phone conferences with him if I ran into trouble. Suzanne Sommers writes about him in her book. I even wrote him a letter – no response. I know he remembers me. Oh well….wasn’t meant to be.
Thanks again for your input. Yours makes sense.

Thank you guys for the responses already. I really appreciate it. At this point I just want some sort of anwsers and am ready to get the final tests done.

Did it take long to get in to have the actual spinal tap? I know with my MRI’s the appointment took a week to get in to. I’m sure it varies from place to place, but I was just trying to get a sense of how soon it might happen after my appointment. I definitley want someone with me although I could probably take a taxi home (NYC).

I haven’t heard any mention of Charcot Marie Tooth from my doctors. I have had blood work done and my b12 was low, but a deficiency issue was also rulled out. Other then that I would assume that they would have looked at that. I looked it up online and my feet seem pretty normal looking (as far as feet go 🙂 ). I do have plenty of issues with my arm on that side too, which doesn’t seem as prominent until later with CMT. My progression of issues started in my neck and worked its way downard, but I will definetly ask about that. Thanks for that mention.

I know I don’t have a diagnosis of CIDP so I hope no one feels as if I’m barging in. I really appreciate your help.

Thanks again!

Thank you so much everyone,
I so appreciate your responses. Mark, you really listened and Emily and Stacey you are so kind to invite me to e-mail you and for reminding me that I am not alone. I am so sorry for what you have suffered and I am grateful that you are well enough to share your experience today. I am feeling better and am restarting the chemo tomorrow at full strength. I’m sure it will be fine. You did it so I know I can! Thanks again.
Linda

Thanks for your replies.Yes he has had two doses of five days each of ivg and has been on multiple narcotics for pain antibiotics for infections and has had blood clots in the lungs and abdomen from his feeding tube.He is now off the ventilator and was in a coma for 8 weeks.He is using a trac mask with a speaker valve but is having problems understanding why him and how long it will take to get better.All the positive talk seems to fall on deaf ears one minute i think he understands and the next he is cursing about something he thinks he is seeing but does not exist.The nurses have been for the most part pleasant but to see a doc is very rare they work the 8 to 4 shifts.He thinks he will be in the hospital for 6 more months but i am not sure.He keeps asking why he got this virus and I can only tell him he was the unlucky one because all of the possible reasons to get it ie previous surgery (had his bowels perfurate from croyns in November) flu , flu shot cold have all happened to him .I am just trying to make it day by day and i really enjoy the way you people share your bumps and roadblocks it gives me a beter understanding of the big picture .Thanks again

Thanks all of you for kind support.

I was away from home for performing traditional after death ceremony at my elder brother’s house, I could not visit this site earlier.

As per our Hindu tradition, there are certain procedures to do on 3rd, 9th through 13th day from the date of death (to be performed by the elder or younger son).

Since my mother was well admired for the hardship she faced during her life, the functions on the 10th & 13th day were well attended by the relatives and family friends.

Anyway I once again thank you all.

Thanks guys….it’s always good to hear from someone who’s going through or has been through something similar. No one at home really understands why I have NO ENERGY…especially after my plasma exchange. They are so use to me being a mom on the move all of the time. Now, just the slightest activities in my wheelchair fatigues me easily…I guess my body just needs a break.

Actually, I am on Celexa and have been on it (for depression) for a couple years now. It’s a great drug. It’s actually prescribed for panic attacks….so that makes us wonder if I was really having panic attacks..hmmmm…overall, I don’t feel depressed or stressed any more than is to be expected. Everyone is shocked at how my spirit has held up 🙂

SIDP…I’ve never heard of that one until now. It’s been almost 13 weeks since my first symptoms began. But is a good thing to bring up for tomorrow’s neurological visit.

Thanks again & you guys are always in my thoughts too!

Becca

Thanks for the well wishes! We will certainly be sharing pictures when we have them – what an exciting Labor Day weekend we have in store!

Linda

Thank You all for your posts. It has given me information about GBS and hope for my father’s recovery. I will keep you all informed of his progress.

Hi all. Thanks for the info. My enzymes are only slightly elevated, which is why my neuro says it’s nothing to worry about. It’s the other doc who’s concerned. I’ll get the scan anyway to be sure. I get screened for hepatitis — all negative.

I didn’t know blood pressure meds could have an effect, but my enzymes were fine until IVIG and I’ve been on BP meds for a long time. The only tylenol I ever take is pre- and post-IVIG (to avoid/manage headache). I do take ibuprofin for bad pain, but primarily asprin, which probably also has it’s effects.

I get sucrose-free IVIG. I’m not diabetic but my neuro prefers it since sucrose alone can cause kidney damage. It also apparently has fewer side-effects.

Homeagain — I agree — life is too short to spend it worrying!

Caryn

I will check out al of my option while in this transition. thanks again for finding the time to reply to me. It makes me feel less alone.

I have received alot of great advice but the main thing is getting her to read it. So far she seems to think everything will be fine in a few weeks or a short time anyway. I’ll just keep getting on my knees and praying.
Thanks
Tim

Thank you all for your help and suggestions. Ty, there was a great deal of great information in your reply, and the more we know when we see our doctors, the better our questions. My doctor did change some of the meds and I am to have an MRI on Monday so will know more than. Diane

I have to say that everyone here is so nice and willing to lend a helping hand right away. I feel very lucky to have found this site and look forward to becoming a regular here. My wife says that I apologize for my disease way too much, which is hard sometimes. I have been reading a lot lately about CIDP/GBS and I don’t have to like the disease but I’m understanding more about it everyday. I’m on prednisone for the first time and I haven’t seen any benefit yet (on week 3 now) I’ll be on it for another 3 weeks and hopefully I’ll feel a difference. IVIg did nothing for me 5 years ago but I may give it one more go. I am on the count down right now to leave work. May 13th 2007 is my last day. 22 days from now, it’s like 5 minutes really, itwill be over before I know it. Is anyone on Myspace here? I have a site if anyone wants to communicate there as well. That way we can put a face to the name. I hope it’s not against the rules to post my site. myspace.com/childs23

Michael-Greensboro NC

Thanks for the reassuring info on the eye exam. Any exam with the word “neuro” associated with it makes me worry.

I can’t imagine that my vision problems are anything but related to the CIDP. Never had this before. Also, my doc always asks about my vision and checks my eye movement at each exam. The good news is that she didn’t see anything wrong with my eye movement. But because of the CIDP, she wants a very thorough workup to determine if this is neuro related.

I just want to thank all of you for your replies, it just reinforces what I said about how much this forum helps us all out. I have always wished so much that we were all closer so that we could actually meet each other, especially my friend Maria, but how far Cyprus is from Minnesota! My son was born with spina bifida (born paralyzed below the waist) & I was always his caretaker when he was growing up. How guilty I always felt that he could not do the majority of things that his siblings did.

After I became ill, he was actually my daytime caretaker for months until I was well enough to make my own breakfast & lunch. We had many discussions about whether it is better to be born ablebodied & lose one’s health, or to be born disabled. He prefers that he knows nothing but disability, I, on the other hand, am grateful for all of the years I was able to dance, ski, play tennis, run, skate, ect.

When I go to sleep at night I can still run around a tennis court, swish down a snowcovered hill, run the hurdles… Maria is so right about swimming, as in the water I can run & jump as well. I still have my down days, & some very down times, but so do many people without CIDP. It is all in the way we choose to look at life, as most have some kind of adversity, even though others may not be able to see it. But how wonderful it is to have a place to come & vent when these days come, so that we don’t overburden our loved ones. That is what is so great about this forum…

Thanks to everyone for the warm welcome. I’m sure you’ll be hearing from me again. This condition is not a static one!
Caryn

Thank you guys so much for the speedy replies!
I realize now I probably posted in the wrong “forum” oops!
I’m just happy to have some answers and find I’m not alone with this strange syndrome.
Wish me luck tomorrow. Please keep my husband and three little girls in your thoughts/prayers if you could…they need it more than me…it’s been harder for those four!

Becca

Thanks to all of you using this great service. We are trying to spread the word and we appreciate all the help.

-GBS/CIDP

Hello again and thanks for all your replies! Hand tremors seem to be quite common amongst GBS patients. I find that the more I use my hands, the more they tremble. They’re very noticeable first thing in the morning and especially if I’m in a hurry and want to do a lot of things all at once! My doctor told me that there is medicine available for the tremors, but doesn’t want to give me any for the time being, hoping that the tremors will eventually disappear. They seem to have got a little better since I was discharged from hospital last month.

Teresa Anne, I was in hospital for five months (17 Aug – 11 Jan), which is a lot less than my doctors had predicted. I was told I would be hospitalized for “months and months”…of course, I didn’t listen to them 😀

Thank you all for your insight. I am almost worried more about my mom seeing my fatigue, no matter how I try to hide it. She gets so worried about me ,and I swear, I think she should be thinking about herself, but maybe it just might feel good to her to comfort me a bit. It’s kinda hard to hide it all the time, you know, especially when you are slurring your words and walking with a limp. About my support group, HA, HA. The people at work think I’m just fine, and it’s all in my head or something. The Doctor’s have written notes to put me on lighter duty for over 5 years now but they always seem to give me the hardest assignment. I almost think they want me out of there. Like they are testing me. It drives me crazy because as you know, if only they could walk in your shoes. It is so depressing, but I try so hard to over come them at least. My best friends understand, but are on totally opposite shifts then me . In all, nobady gives a darn, as long as the work gets done. I was thinking today about how maybe I could get disability again, to just work P/T. That is what I really need. I am blessed, however that my mom has no pain. I am so greatful for this. I really can’t even talk about her at work because thy are so selfish. They are like…. OK so your mom is dying….Just work and don’t call in. It makes me ill. It’s almost like they don’t beleive me againh. HURTS!!!!!! She has lost 80 lbs in 2 and 1/2 months and is on her way out. Is all they care about it seems is getting the job done. I feel as if I’m dying myself. Do they really know how hard it is for me to work full time and take care of my mother. If I don’t see her for a day, and it’s only been once, she is so scared. She just wants me around, you know. I am getting upset so I will say good bye for now. Thank you guys so much again. You are, and always will be my second family. xoxoxoxoxo Roxie

Thanks Ali and Chrissy,

For always being so sweet. Suzanne I understand where you are coming form however sometimes things are easier said then done. I’m social, I’m just tired and when your tired the last thing you want to do is talk up a storm. One of the reasons I stay to my self is because I don’t want them to know that I’m sick, who wants a sick person working for them. I need to save my energy, time and money for myself and my family not doing things for work mates. I do have a nice temp boss but I have been here a year. Thanks I just had to explain more cause I felt like a false picture was being painted of me! 😮
[FONT=Arial][SIZE=2][/SIZE][/FONT]

Thank you Ali.:) I have BCBS as my primary but it’s through my teamsters union. and it’s called TEAMCARE but the card has BCBS PPO all over it. So far they have covered the bulk. I have a $1000.00 out of pocket per year and a million per yer max. Always good to hear from you. I am so new to this and getting educated everyday. I would be so in the dark if it wasn’t for this forum. THANKS AGAIN!:)

thanks for your good luck messages for Dan. He is being treated in Liverpool, but we live in North Wales.The original patient to receive this treatment for CIDP was at University Hospital ,Cardiff I believe.We are currently waited to hear when he is to be transferred to a neuro rehab hospital.

Thank you all for replying and sharing. It really helps to know there are others . You would think that for a disease that is so real, there would be more info and awareness. It just doesnt seem to be that way.
I plan to fight every step of the way…b/c it’s the steps I dont want to lose.
I just need to shake the denial. I’m a person that lives the “never let em see you sweat” and it’s hard for me let that go.
I’ll be going for another round of IVig once the supply is available here…likely within the next two weeks. Hoping that since it’s been almost two mos, I can still just do one rather than five days in a row. It’s so boring sitting there for an entire day.

And yes, my spinal tap hurt. The first dr that tried had to stop b/c I screamed and had non stop tears. They had to do it with fluroguide. They also took 20 vials of blood that day.

I dont know alot about the blood results and what they mean…
Protein level was 74 and albumins were low if i remember correctly.
And the sedemintation rate was also high…i dont have the papers in front of me right now but would like to know if anyone knows what these things really mean.

thanks again…I’ll be around ! Time to do some housework and feed the family.

My neurologist wants my to get a IVIG Thursday and one per month for a year. I haven’t done anything in a week and my feet and legs are very painful. They remind me of a baby not being able to talk and tell me what to do so they cry if I stand , cry if I sit , nothing seems to calm them down. They are also going to do another nerve test on my legs friday morning. All of this is contingent on the weather, we are supposed to start getting ICE tonight through friday.
Thanks for the posts
Tim
SEVERE GBS 10/11/2006

for all of your responses. Taryn, I’ll look into UCLA. I’m very fortunate to have incredible medical coverage and now that I know a little more about GBS and its after effects, I might be able to explain the symptoms a little better. I’m a little peeved that I didn’t find out, until last week when I found this board, that GBS could have lasting effects. For so long, I’ve been told the opposite.

I have read some of the articles referenced on here and other boards. But, most of them appear to be abstracts that require a subscription. If anyone should have some other articles, aside from the Dr. Parry and one other one I can’t recall right now, I’d be very interesting in reading them. Thanks.

It’s a sad sad fact that I don’t even have a primary physician. I usually just see the Dr at my Urgent Care Center, who is the one that’s been treating me for my arthritis. I suppose two years is long enough for me to have head my head stuck in the sand regarding this issue. My daily living is now significantly affected. I wonder, do the symptoms like muscle spasms and muscle fatigue, and other issues get worse without treatment?

In any case, I look forward to continue reading this board and being a part of the community here where people know what GBS is.

Thanks again for all of your responses.

Becca

thanks everyone for the info. i also had an er dr that thought i was just seeking drugs , he went so far as to send me to a mental/addiction hospital for drug addiction and potential suicide, it took me all day the next day to convince everyone that i was not just seeking drugs, that i was in “real” pain and that i had no intentions of hurting myself in any way, all i wanted was some relief from the pain, so they released me to my family with the understanding that they would keep an eye on me, u can imagine how i felt, my family knew the truth but convincing doctors was another thing altogether. i hope no one ever has to go thru that.

gloria

Thank you so much for the replies, nice to have ppl who know what I’m going thru and can give me advice and encouragement. This forum is just what I need right now.:)

Thanks Suzanne,

It’s true that resting up and not pushing myself too hard is a good idea! I try never to overdo it physically, and I have not pulled an all-nighter since I started school (although sometimes I do a full day on only 4-5 hours of sleep, which I know is not good, and my stiff feet and hands let me know this).

Thanks for the motherly concern – it’s nice to know that people out there got my back 🙂

Thanks for the reply Sr. Jeremy. I tried myself to go thru all postings, but was almost impossible. There is much to tell, there is so much people believing wrong. I am very sorry if I confused people, because my objective was different. I will keep this one short, but my God, please help us to go thru this sickness, iplease no more re-elapses in the name of Yeshua. Let us recover and learn the lesson, protect us from the enemy and let us enjoy our life with our families and friends, and be stronger than before.

God bless you.

Ciao from Italy.

I would like to thank everybody for their assistance. I will definitely talk with the doctor. I’m beginning to understand that CIDP has many faces. It is great to know that there is forum to get information. Thanks again:)

Thank you both….

I will make sure he gets the attention he deserves. This is the second neurologist among many other doctors that he has seen. She was the first one to say that she thought it was gbs, and the first to give us any hope that he will eventually get better. I sobbed in happiness when she told us that. Before her, the docs just said they didn’t know, but come back in two weeks if it wasn’t better….etc.

About the Methotrixate, I have looked it up online, and in higher doses, it can cause neuropathy, but his dosage was very low comparatively. The thing is, however, he was on it for three months straight, then he lapsed for three weeks due to not refilling the Rx and missing a doctor’s appointment, and the weekend he started it back up was when his symptoms started. I checked to make sure the pharmacy didn’t give him a larger dose tablet accidentally, or if the manufacturer changed the formula, but none of that. Maybe just a strange coincidence, but he doesn’t remember having any kind of virus, so I guess we’re grasping for a reason that this happened.

Thank you for the support. I will keep you posted on the results of the tests and his progress.

[FONT=”Comic Sans MS”]Thank you all. Now to find a doctor familiar and local. Tampa is actually closer to me but I hate going there! Maybe when I can get two seconds to rub together I will give one of the doctors a call. Like I said before, per my mom I was diagnosed when I was 6 months old and paralyzed in only my right leg. Now 37 and change years later I am experiencing more and more fatique. I wish that sleep was an option in my house. I try and get at least 9 hours at night and during the weekend tack on about 4 more hours. But I am still tired! I have completely lost my energy. My legs are killing me! A constant onset of pain. No pain relievers relieve! Not aspirin, Tylonel, Bufferin, etc…and my PCP doesn’t give out pain meds. (Probably a good thing he is leaving and I am forced to change doctors). Sorry, don’t mean to blab on about this but I am tired of the pain. Have had it for many many weeks. Thanks for all your insight[/FONT] I really don’t have alot of time to take off work to do all this but I will try. Somedays I wish that I wasn’t able to get out of bed so that I would have a great excuse not to go into work but I love my job and I do my job even when I am sick. Wierd ain’t it.

Thanks so much for your replies!
I saw the nurse this morning and was told I needed to get typhoid as well as the combined tetanus, diptheria and polio immunisations before I travel. I was hoping I would be told that there was nothing to worry about but the most concrete advice I got was that GBS is considered a “non-proven possible side effect” of ALL immunisations now. I had the same advice from my neurologist, doctor and from GBS groups.
I wish more was known about GBS but all you get are “possibles” regarding all aspects of it – possible causes, possible treatments which might help you recover, possible chances of full recovery! I chickened out and she gave me another week to think about it. Nothing scares me more than the thought of getting GBS again. I know they say getting a fatal tropical disease is a lot worse than getting GBS because at least most people survive GBS but if there’s anything that can be done to avoid triggering it again then I’ll do it.(once was enough!) I have read so many contradictory things online. I still haven’t made my mind up on what to do but I’ve just found an article which has given me hope and it is from a good source. [url]http://jnnp.bmjjournals.com/cgi/content/full/73/3/348[/url]
It suggests that chances of recurrence of GBS following immunisations is probably less than 3.5% and those people only had mild GBS symptoms which didn’t require hospitlisation or treatment. That is reassuring to know. I might just have the typhoid shot as the nurse thinks I’m probably pretty well covered for the others from childhood and could get away with it (?!).
Anyhow, sorry this is such a long post but I hope you find the link useful or interesting.
x

Yep it came on fast. I have had burning like as in Hot but not like as in Acid feeling. I will give you my number. Thanks

that be sweet…
fartherest I been west was new mexico. let me git my map out and figure out what country oregon is in. I did 6 months time for joining the army in Fort Bliss. texas. I’d shute the bull with ya, but I think I musta missed one of those horse tranqualizers last night, and I haven’t had any sleep. I’m goan count those things tonight. hehe
Then it might be that I’m so excited about getting that order for Rituxan.
Anywho I’ve got a bro, hanging here with us right now, soon he will be on his feet, and then u be wellcome to stop by here for music lodging and eatin
I got a green machine guitar to work on. I’ll post some pics of it when I get to feeling stronger.
Take a picture of a booger and put it up there. its 60 by 60.
thanks for the laugh. You know you are in class by itself.
*bows*

WOW!! Thanks you guys. I am so glad I found this forum. I have been trying to get my mom and sister to set up and join this, but well they are stubborn..
I have requested info packets for both myself and my mother. I guess I never thought about getting one to the Doctors. They have been really great to my dad and based on what my sister told me today they are looking at maybe giving him a last dose IVIG tonight. At least that is what they were considering. They are pretty certain that they won’t have to give him plasmapheresis, so thats a good thing, right? Again thanks for your support and info. I will keep you all posted.

Stephan

the treatment is something called ivig, i think, i am sure you all know about this.

Yes I would I agree. Since I’ve been off the Keflex my neuropathy seems better. I do go for the rest of my root canal on Thursday. I’m not sure if I get more of the Novacaine again. I’ll let everyone know how I’m doing then.

Caroline

Thank you very much for your attention and tips.

[QUOTE=DavidBod].Treva, the question of heavy metal poisoning crops up from time to time. Lead and Mercury are the two met with most often. Lead causes bilateral wrist drop and severe anaemia, mercury causes facial sores, drooling from the mouth and ‘dementia’ as in Lewis Carroll’s madhatters tea party. The hatters made their felt by by mixing wool into great vats of mercury nitrate. Cadmium and Zinc also cause poisoning mostly gastrointestinal though liver and kidneys may be involved. Arsenic is not really a heavy metal but chronic poisoning usually presents with flushed face, peeling of the skin especially palms, vomiting and diarrhoea. In addition at it can cause a sensori-motor neuropathy similar to GBS. More information can be found in Google under cadmium poisoning. Toxicology used to be my field as factory doctor and forensic physician. DocDavid[/QUOTE]

I will pass everyone’s posts along to my dad. We will have electrodermal screening, cranial nerve analysis, and hair analysis as soon as my dad is up to the trip. I appreciate your help! Thanks!

Ali, thank you for everything you’ve already done for me and my dad! You’ve been wonderful!

Soapy, we live in Trenton, TN which is about 30 miles north of Jackson. I work (out of an office on my property) for The Arc of TN located at Metrocenter Blvd in Nashville. So, I get to Nashville at least once a month.

Thanks again for responding!

Thank you for the contact info on a GBS Liason in my area. Broomfield is actually only about 15 miles from Longmont. I’ll be giving Ann Brandt a call today. Not sure what I’m going to say to her, but perhaps she can help me a little.

Thanks everyone for your help. I think this is a great website for help. NIce to know we aren’t the only ones out there going through this. I will keep posting to let everyone know how nathan is doing.
God Bless,
Heather