Residual GBS v CIDP

    • Anonymous
      February 15, 2010 at 12:15 pm

      I know that I have asked this question before, but how do you know if you have residual GBS symptoms vs. CIDP?

      I have tried to look up symptoms for CIDP and I have found all different kinds of information. I assume that it is different for everyone, so that is why it is confusing?

      I have continued symptoms (3 months since onset) that wax and wane, hourly sometimes. I had an acute onset of lost reflexes and bilateral arm weakness, but that came back after 10 days. Currently, I get some tingling in my fingers, one of my feet, my right toe feels sort of numb (but when I poke it with a pin I can feel it), pain in my arms from where they were weak. Sometimes I feel like my arms are getting weaker again, but it is hard to tell. I can lift my daughter who is 27 lbs. and carry a laundry basket fine. I have had muscle twitches, but they seem to be lessening. My elbows feel funny. If I press on the ulnar nerve, sometimes my fingers will tingle and go numb. When I am sleeping, sometimes my left big toe goes numb and my hands. I have brain tingles. I have intermittent burning pain on my back, that moves around sometimes. I constantly have GI issues due to “mild gastroparesis,” constipation, nausea, loss of appetite. Every day is a struggle to eat. Sometimes I have urinary urgency and what seems like bladder pain, but not all the time. I have hair loss, and irregular periods. I feel “sick” all the time, no energy, periods of fatigue. I am able to work though even though it is difficult, and take care of my kids and house if I pace myself.

      I know that my reflexes are still there because they have been checked recently, and I have had 3 EMG/NCV’s. One in November, December and January that were all “normal.” I don’t understand how I can have ulnar nerve symptoms, yet the EMG/NCVs are normal. I don’t feel progressive muscle weakness, but I am not sure about my arms. I am awaiting test results for “small fiber neuropathy.”

      When I read about GBS, it says most people recover in 3-6 months, sometimes longer. What does that mean, that you are back to your “old self” with no symptoms whatsoever? What are the symptoms of nerve regeneration or recovery? It seems as though some of the same symptoms for nerve recovery, ie. tingling, can also be symptoms of nerve damage? I am confused. I would appreciate some guidance.

    • February 15, 2010 at 12:54 pm

      In the begining I too would be on this site asking the same questions over and over. We presented exactly as you. It was about 5 months post before enough weakness happened that we went back in and had a comparison ncv/emg which in fact was worse. Then we were dx cidp. For 5 months we had good days and bad. We however unlike you did after 3 months notice things were heavier, you are not. About the urinary issues. The problem was not being able empty all the way. This could be caused by pressure on the bladder as a result of the constipation. Dulcolax works pretty good, 2-3 pills, but I would recommend you be home for a day or two. Regular metamucil for a regulatory purpose helps too.

      You mentioned your ncv is good, some people do have a good one. There are tests for the small fiber, skin biopsy and nerve biopsy which shows continual demylienation. Some people say not to do that one for the after affects at the area, others say no big deal. Something for you and your doc to talk about. I was going to suggest asking about cmt, however your ncv is good and typically a ncv would show the same that is how we got our second mis dx of cmt. I am going to send you a private message later.

    • Anonymous
      February 15, 2010 at 1:39 pm


      I did have a skin biopsy last week on my leg and a sweat test for the “small fiber neuropathy.” The neurologist suggested possible autonomic variant. I am awaiting these results later this week. Thanks for the feedback.


    • Anonymous
      February 16, 2010 at 11:26 am

      Well, I am guessing based on the lack of comments on my post that my symptoms are not residual GBS or are atypical or are the beginnings of CIDP. I am a bit discouraged. Waiting for my “small fiber” test results later this week. Last night, my right ankle went numb while sleeping. I was freaked about it, told my hubby about it, and it made for a stressful a.m.

      Anyone have any advice on how to deal with spouses? I know mine has beared the brunt of this, me always complaining and worrying, and him not being able to help me. Do you just not talk about it, pretend like everything is fine? Talk to therapists? Find other outlets? (hobbies, etc)

    • Anonymous
      February 16, 2010 at 3:41 pm

      Hi Jessicah: You are very new to the healing process-three months is hardly any time at all. You need to be patient and realize GBS takes a long time to recover from. When people say they are better in 6 months it usually means they can walk again. Most people have residuals that can last for years-your symptoms sound like residuals but I am sure the tests will help to clear up the mystery of GBS vs. CIDP. With CIDP symptoms start more slowly and heal more slowly (usually) and there is repeated demylineation, while GBS is an acute disease that comes on fast and usually begins to heal fast, but leaves behind nerve damage that causes residuals. Also with GBS residuals you usually do not experience continued weakening-you have reached a point you normally stay at, though residuals come and go.
      If your doctor is concerned about CIDP by all means do the tests. But you describe fairly normal residuals. If I might say so you are being hypervigilant like many of us were. You are looking for every change to mean something, to show you are getting worse and that only increases your stress and certainly can effect your GI issues. After a while we learn to live with the ups and downs and not panic over every feeling. I am not saying don’t check it all out with your neurologist, but if it is GBS you must learn to flow with the residuals and not think they mean the worst. You can drive yourself and your husband nuts if you keep reacting every time. You need to think of your recovery in terms of years not months-it can take two years to even know how much recovery you will have. Jeff

    • Anonymous
      February 16, 2010 at 4:50 pm

      Thanks Jeff. You are definitely right about how I need to calm down and go with the flow. I am one of the worst people for this to happen to, since I was a “hyper” chondriac as my husband calls me, before this even occurred. I would have actual symptoms, as opposed to a hypochondriac, but would imagine the worst. I got the H1N1 vaccine because the media put me in such a panic, and I was worried for my kids. I took them in and they said, “would you like it too?” I have learned my lessons now…I do panic over every little change/symptom. It is such a weird thing, all these bizarre sensations.

      I will try harder to be more patient. I have a new motto, one day at a time. I am very type A and have been all my life (went to law school, not practicing), but you get the drift, so patience is not one of my strong suits. I also want answers like yesterday. It has been very hard for me to slow down and to let things go, a big personality change for me. Now I let the dust accumulate a bit around the house, and have learned not to worry as much about things. Christmas this past year was very low-key for the first time for me. I was not worried about it, and I thought, things will get done somehow and they did. I am grateful to my hubby for stepping up, and I will try to be nicer to him. 🙂

    • Anonymous
      February 16, 2010 at 9:29 pm

      Hi Jessicah, I think we are twins with our “hyper” chondriac personalities (except I’m about 30 years older than you). I had all those post symptoms that you do. I was totally paranoid about CIDP until I was 2 years post. I left you some info on the autoimmune diet on another thread. It gave me a feeling of control during an illness over which I found almost no control. I am 2 1/2 years out and I am just now feeling much more normal in terms of my nerve sensations. Just this weekend I actually shoveled snow and didn’t twitch, tingle, vibrate or any of the above. It’s a miracle. The NIH website has been following some studies on GBS. Those studies now suggest that many GBSers still experience improvement 5 years after the disease. Just a few years ago, I was hearing about the “fast” recovery. I’m sure folks continue to improve as long as they live…nerves are strange and wonderful. Your anxiety is understandable and normal. It will fade slowly away. GBS is a pretty catastrophic disease. Thankfully, for most of us it happens only once in a lifetime.

    • Anonymous
      February 16, 2010 at 9:35 pm

      Why? Because there are alarms and bells and whistles going off in your body and thus your mind!
      Also, the more you stress? The less you can DO for your family. Be simple, almost understated, but DEFINITE in describing briefly your problems to your doctors…when they ask for additional info? Be sure you’ve got it all on file ‘in your mind’, as those elvaluation interviews are key to getting any neuro to WORK for you! Anxiety? They ask about that…of course – My reply? IS: WHO WOULDN’T BE? Having all this go on? Don’t know about you, but makes sense to me, and should to them! Don’t forget, it always seems that doc’s have a short attention span? Keeping it sweet, simple and concise is key to staying on focus to YOUR problems.
      As for whether it’s GBS or CIDP? The lines are muzzy to me, and I’ve tried to figure them out for years.
      As for being type A? In some ways I was too…before. Yes, there are new priorities? And they are more important priorities that essentially require a more type B person. Learning more about what you have and understanding what goes on in YOU when things ‘happen’ helps you cope. And, you sort of have to ‘change the channel’ to CHILL OUT at times. My heart is with you and I hope that you do get a good diagnosis and prognosis for your pain.
      Don’t be afraid to fight for what your body is telling you that something is wrong! – Keep fighting for a ‘name’! Surprising how that ‘name’ helps others to understand? And for you to cope.

    • Anonymous
      February 18, 2010 at 3:42 pm

      Thank you Dawn, Jeff, luv2sail and homeagain for your words of encouragement! It helps me to know that I am not alone. Family and friends do not understand and how could they? My mom told me that it is “over” and to “move on.” Not very understanding?! People tire of hearing you talk about it. I have moved into a phase where I am not talking about it to them, and just venting here or finding other ways to cope.

    • February 18, 2010 at 4:00 pm

      I am glad you feel comfortable enough to come here. helping others makes me feel a little better about this entire cidp crap. So your coming for help is helpful to me as well. Win Win! I think from my obsevation of my son, that having others not believe you are tired or in pain is more painful to him than the pain itself. That has been the hardest thing to overcome. It takes some getting used to and unfortunately requires you to toughen up to protect yourself. You will figure out in time what method works best for you when addresing those who doubt the reality of YOUR situation.

    • Anonymous
      February 18, 2010 at 4:36 pm

      Dawn, you are right in that it is an “invisible” disability. Your son is very lucky to have a mom like you. And you are an asset to this forum…I always see your posts and you trying to help others. Thank you!

    • Anonymous
      February 23, 2010 at 11:31 am

      An update:

      In the last week, I have noticed improvement in some of my symptoms, such as appetite ( I have gained about 2-3 lbs), the burning pain has lessened, and the twitching in my muscles has gone way down. I have a little more energy and have felt a little bit like myself, not nauseous and flu-like. I don’t know if this is temporary, but I am trying to be optimistic. On the down side, I have noticed more aching pain in my arms and legs (maybe because I have more energy?), and still tinglings and numbness. When I sleep, my arms/hands go numb, and it seems like my ulnar nerves are particularly affected. My depression/anxiety has abated and I feel somewhat calm.

      My neurologist left me a message saying that the sweat test and skin biopsy to check for my small fiber nerves was negative. She said that the H1N1 vaccine does not appear to have caused nerve damage. As I have mentioned before, my EMGs/NCVs were all normal with the exception of the first one being borderline, and my bloodwork was normal. I have been diagnosed at this time with “mild” GBS.

      I am glad about all this, but wondering where I go from here. Do I just continue to self monitor this adn see the doc as needed? Do I need to schedule regular follow-ups with the neuro? Should I have any additional tests? Can people have normal tests even though they have “mild” GBS? It is all so perplexing to me how I can lose my reflexes and have arm weakness and have normal tests.

    • February 23, 2010 at 1:21 pm

      Hi Jessica,
      Yes, you can have a normal ncv/emg and even a normal spinal. Many on the site do, this is what makes their dx so difficult. However, you DID have a borderline ncv/emg as you stated. (Is that compared to a more recent one which shows improvement?) That at least shows a baseline of the begining of the illness, in the event you should ever need to refer to it in the future. Maybe it is possible it was just an awful reaction to the hini? Or maybe it was mild gbs as docs say. What you say seems to be more important! You are feeling stronger, more energy etc. Those things are positive!! If it were me, regarding your question about follow up, I woul keep the docs # handy and keep a diary of symptoms, maybe a chart, documenting the same things every night/day. For instance, time it takes to walk to train from office, level of difficulty doing it (1,2,3,4) how hard it was to lift the dishes out of the dishwasher, how hard it was to carry the laundry basket. Rate simple things you do every day on a scale and watch the pattern to see if things stay constant. If you notice things faltering, then I would go to the doc. The neuro is not always easy to schedule and you were thinking of changing. So before you give the docs a rest, maybe find another neuro and get a baseline exam regarding reflex response, stregnth etc. So that you have a baseline on their interpretation should things go south. After that, give yourself a break from docs and relax. I REALLY believe that all of these docs make Kev more anxious!! Try not to over do your new gains and strides. You sound like you are turning a corner, physically and mentally!:)

    • Anonymous
      February 23, 2010 at 2:34 pm

      Thanks Dawn. That is a good suggestion about getting a baseline with the new neuro. I called Northwestern today and they said I need a referral from another doc, so I will have to call my family doc to get that. I haven’t been to the doctor in over a week, woo-hoo! I am taking my son tomorrow, but that doesn’t count. 🙂