From GBS to CIDP
AnonymousOctober 25, 2007 at 8:07 pm
This question is for all of you who were first diagnosed with GBS and later the diagnosis was changed to CIDP. Did you recover from the first episode and have another (or several) distinct episode of weakness or was it a gradual progression of symptoms that led your dr. to change the diagnosis? I had a pretty good recovery from last October until the beginning of September this year when it all started to go downhill again. 😮
October 25, 2007 at 9:34 pm
We are in that boat with you! Kevin is going to the neuro tommorrow. I just can’t seem to get a grip on residuals of gbs and cidp. His hands are very weak today. Not as weak as they initially were, but the grip stregnth is pretty non existant. But on the other hand, he can still cut with scissors, open cans and other things, but lifting the wash rag in the shower is hard, writing and as I mentioned no grip practically. The rest of the stregnth in arms, legs seems to be very good. As well, it gets better some days. I just have to check it out with the doc. We have been dx gbs, cidp, gbs and now ? Good luck to you in sorting this mystery out. We wish you well!
Dawn Kevies mom
AnonymousOctober 26, 2007 at 12:03 am
I was originally dx with GBS as my decline happened in a matter of weeks & not months. But I had a very severe case of CIDP, so thinking back now it seems logical to me that at first they could think it was GBS. It wasn’t until 6 weeks later, after 5 PP treatments & many IVIGs with no improvement, that my dx was changed to CIDP (also, I did not have any breathing problems.) I think sometimes the line between these two illnesses can be so minute, that it often hard for the neuros to differentiate between the two. Complicating thing even further is that there are different types of CIDP; the relapsing/remitting where the patient usually is treated with IVIG & often makes almost a spontaneous recovery, or the progressive form where the patient slowly continues to get even worse…
The only thing you have posted that hints of CIDP to me is when you mention Kevie being able to get up & run the halls after his IVIG treatment. If someone was rather paralyzed with GBS I doubt that the recovery would be that quick, even in a child. Please watch his hand symptoms carefully, & if it appears he needs IVIG as a booster, do not hesitate. Hand damage can be very difficult to get the function back, trust me I know…
AnonymousOctober 26, 2007 at 4:35 am
My diagnosis started off as CIDP because I slowly got numb over several months. Then I suddenly got much worse, had breathing problems etc. and they changed the diagnosis to GBS, then Myasthenia Gravis, then back to CIDP when I continued to have relapses. It was difficult to tell the difference between overdoing it and relapsing at first but I think I’ve got it down now. It’s subtle but this last time I could actually feel my thighs burning, and the tops of them were red and swollen and prickly. Now that the attack is over I can tell they are damaged and don’t do things they used to do before the attack. I’ll probably get most of it back in a few more weeks though. :rolleyes:
AnonymousOctober 26, 2007 at 1:54 pm
I was diagnosed with GBS in November, was admitted to the hospital, got IVIG and felt better, so they released me. I saw some improvement over the next few weeks, but by Christmas I was relapsing again. The diagnosis remained GBS until they did a nerve biopsy the following April, and that confirmed the CIDP diagnosis–because I was re-and de-myelinating so quickly, the myelin had formed a ball shape at the end of the nerve.
My understanding is that it can take quite a while to recover from GBS, so it’s difficult to tell what someone has. Good luck!
AnonymousOctober 26, 2007 at 4:26 pm
Hello Iowa My first Neuro called it GBS, but I had all the symptoms of CIDP. He left the clinic before further testing. The last Neuro I saw had me do sural nerve biopsy which dx CIDP. Alot of mix-ups with this Neuro, I believe she has never treated CIDP> SO today I made an appointment in Kansas City–earliest date Jan 24. He was recommended by Ms Katzman. So then I hope I can get proper treatment. I only had damage to about the waist, then thru hospitalization and PT, I regained upper leg strength, but from knees down both legs are shot and very painful. If you care to see a different dr. his name is in the last newsletter. Take good care. Regina
October 26, 2007 at 5:10 pm
Well, I started a new thread, it is official, the ncv/emg repeat indicated a regression from the last test in July, so it is cidp. So in answer to your question of how fast was the progression, I would say about three weeks. But that was for Kevin, I would imagine others could be much quicker or much slower. I guess it would also matter if it is the relapsing remitting type or progressive. I would say we have relapsing remitting.
For whatever reason, when I asked the neuro, he said it did not really matter which type we had because the treatment would be ivig. I still don’t know if I agree to that statement. In any event since I suspect relapse/remit. for us, ivig is the treatment, so I guess thats what I will concearn myself with.
Good luck to you! I must say for myself, it is a releif to know for sure. I will just hold on to the hope of a cure or remission some day
Dawn Kevies mom
AnonymousOctober 28, 2007 at 7:03 pm
Thanks to all who responded. It has been an 8-week journey for me this time. I have been feeling better the last couple of days. My neuro appointment is finally this week — I called a month ago when I was probably at my worst. I could probably cancel the appointment, but my husband says I need to go. So, we shall see. If I am doing better, will any tests be useful?
AnonymousOctober 29, 2007 at 12:45 pm
a CIDP diagnosis, the internist in the ER found ‘neuropathy’ on the internet and that became the diagnosis for the ‘first’ neuro. After of 9 months of progression I went for a second opinion and a third with a whole bunch of tests that gave me the ‘keys’ so to speak to IVIG. It was the nerve conduction studies, extensive blood tests, and spinal fluid analysis that ‘clinched the deal’ so to speak. I will suppose that I missed the GBS diagnosis as no swallowing or breathing issues occurred then or to date. Having met many who have those issues, I am truly glad I missed that part.
As for progression? Weakness and numbness went from toes and hands to legs and arms in a little over three weeks and ER admission. Progression up to torso in the following six months. IVIG has slowed the progression to a snail’s pace for which I am grateful! I have been on the IVIG 3-1/2 years.
The fastest progression occurred while waiting in the ER. Over an 18 hour period the progression went in the legs from below the ankle bone to the knee joint. The hands/arms from the fingertips to elbow. I am lucky that I found neurologists who are actually famililar with GBS and CIDP. I do not want to ever imagine alternative prosects if I had not been properly diagnosed.
I truly feel that IF I had been diagnosed properly sooner, and either received IVIG or plasmapheresis in a more timely manner that there would be less total and residual damages. Make the best of it all, ask for as much physical therapy as your insurance allows and work hard at it. I hope this helps.
AnonymousOctober 29, 2007 at 8:37 pm
Thanks homeagain. Glad to hear you finally got a diagnosis and the IVIG treatment that helps so many. I did not ever have IVIG because they had a difficult time with the gbs diagnosis. I was never paralyzed, just had profound weakness in my legs, along with numbness, tingling and buzzing in my legs, arms and spine. The fatigue is the worst part for me right now. We’ll see what the dr. says this week. Thanks again to everyone!!
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