GBS vs CIDP ? And can stem cell help?
AnonymousJanuary 23, 2008 at 3:41 am
I was ds with a mild case of GBS and got IVIG for 5 days in August 2007. And my first neuro said I would be totally OK within 6 months. However, after 1 month of receiving IVIG, things did not seem to go well. The numbness went up from my fingers’ tips and toes to the whole hands and lower legs VERY SLOWLY, taking more than 2-3 months. So, I went to have the second NCV and it clearly showed a worse result. I thought I might have faced CIDP in stead of GBS. I talked to my second neuro about that, but he thought It could be CIDP but was still OK because my upper arms and legs were totally fine. Even though I asked my neuro for another IVIG, he did not advise me to have that because my situation was not so bad. Now, it’s been almost 5 months that my situation has not been improved, and my neuro has not done anything different for the time past.
What am I supposed to do with my situation?
Should I insist to have another set of IVIG?
How can I make sure that I’m having GBS or CIDP OR SOMETHING ELSE THAT HAS SIMILAR SYMPTOMS?
Is CIDP treatable?
My friend recommends me to try stem-cell injection, but he doesn’t know well about GBS and CIDP. Have anyone heard about this? Any side effects? (For more info : http://www.mf3-ct.com/placenta-preface.html )
AnonymousJanuary 23, 2008 at 11:48 am
[B]What am I supposed to do with my situation?[/B]
[I]Keep asking for more tests, a final diagnosis, a second opinion, you are getting worse, therefore it’s not GBS.[/I]
[B]Should I insist to have another set of IVIG?[/B]
[B]How can I make sure that I’m having GBS or CIDP OR SOMETHING ELSE THAT HAS SIMILAR SYMPTOMS?[/B]
[I]Wellll…. most of us with CIDP went through multiple diagnoses (GBS, “something else”, etc.) before the Neuro settled on CIDP. There are many tests that can detect “other diseases” and GBS, including a lumbar puncture to look for protein. If your neuro has not done an LP yet tell him you’d like to have one done to check for protein. [/I]
[B]Is CIDP treatable?[/B]
[I]I’m going to say a qualified “yes”. It’s treatable, but the treatments have a variable effect on individuals, and can have a variable effect on the same individual. Some people struggle to find something to arrest this disease, others will have a “good” recovery with regular IVIg treatment. Finding out what helps and how often to take it is probably the most frustrating part of the treatment, it can take a long time and a decent amount of persistance with your doctor to adapt the treatments to what works for you.[/I]
[B]My friend recommends me to try stem-cell injection, but he doesn’t know well about GBS and CIDP. Have anyone heard about this? Any side effects? (For more info : [url]http://www.mf3-ct.com/placenta-preface.html[/url] )[/B]
[I]Can’t help you here, don’t know a thing about it but it sounds good in theory. 🙂 [/I]
For certain if you are getting worse, no matter how slowly it is progressing, you need treatment. “Not bad enough” is not an appropriate answer from your neurologist. People get IVIg when they have a small patch of numbness between two toes – it’s not up to him to decide you “aren’t bad enough” especially when your numbness is progressing. Ask for what you need, let your neurologist know that you are concerned about the progression and if he still balks at it then go shopping for another neurologist. It’s your body, you have to live in it, not him.
Good luck and let us know how it goes with the treatment. 😀
AnonymousJanuary 23, 2008 at 12:55 pm
I was diagnosed with GBS. Had the IV treatment in hospital for 1 week. Got progressively better for about 4-6 weeks then the numbness in hands and feet started to increase again, (mostly in hands), and this was accompinied with a very selective body rash.
Any thoughts or questions?
AnonymousJanuary 23, 2008 at 2:16 pm
Thank you so much for your answers. I really have no idea where else I could get this kind of info. Oh…I forgot to tell you that I have not had any lumbar puncture yet. Because the first IVIg worked very well for me, and my neuro said GBS and CIDP would be treated pretty much the same way. So, he said that I didn’t need to have a lumbar puncture, and that he knew how to cope with my situation.
So, my question is “can a result of a lumbar puncture tell me exactly what desease I’m dealing with?”
Anyway, I am going to meet my neuro on Sunday. Let’s see what will happen!!!
Good luck for everyone!
January 23, 2008 at 5:02 pm
You would have an elevated protein with both gbs and cidp, no difference. Also, it is possible the l/p could come back negative. You already know that ivig works and your symptoms returned in 4-6 weeks, I would have another round of ivig and if it once again helps, you have your answer. If it were gbs, the ivig would not have a profound affect on you weakness and stregnth for a second time. If the weakness persisted with the additional ivig, I would say it is gbs residuals and you are doing too much. (I say all this with the premiss that ivig DID have a profound affect the first time.
Now I suspect the neuro will order a scheduled dose of ivig. My son for instance gets a loading dose once a month. That does not mean your neuro will prescribe the same treatment. Everyone’s treatment is tailored to their specific needs. You are lucky like my son that ivig works so wonderfully and you can go a long time in between. Something of importance to remember is that the key is to NOT have any symptoms in between ivig. Symptoms indicate an active demylienation. The objective is to keep the autoantibodies at bay and the antibodies in stronger production. (for lack of a more technical way to explain it, this is how I understand the process to be) Good luck!
Dawn Kevies mom
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