Residual GBS v CIDP

Jessica,
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.

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

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.

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.

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.

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!:)