GBS Relapse Variant or MS
AnonymousAugust 9, 2007 at 9:23 am
Hope someone out there has more knowledge. I had guillain barre in 1986 as a 9 year old child. I was treated with plasmapheresis. Made spectacular recovery when doctors thought I would never walk again by myself.
Had a baby Nov 05, never felt I regained all my strength. I weaned my baby Nov 06 and I started having sensory loss in my fingers and toes. Since then I have been through three doctors and finally to a neurologist who specializes in MS. He has done two MRI’s, EMG, blood tests, spinal tap and he hasn’t been able to differentiate is this is a post guillain barre variant issue or if it is early signs of MS. MRI brain scan was normal, neck scan found an old lesion. EMG was lower than normal, but believe is residual from Guillain Barre as a child. There was a small portion that was new though, so now three months later after taking intravenous medrol (didn’t help). He has ordered a second EMG, a third MRI and wants me to start taking Gabapentin and one of the daily injections for relapsing remitting MS.
Symptoms have been very slow onset since weaning my child Nov 06.
Anyone out there have MS after guillain barre or could this be a post guillain barre issue?
AnonymousAugust 9, 2007 at 12:52 pm
Hi MnGirl, Welcome to The Family. Has CIDP come into the picture as a possible dx? It fits the tests. Did they find the o cells in the lp? if they did then its ms, if not then there is the good possibility that its cidp. What do you mean by new on the test? There are several variants to each-gbs, cidp and ms. Did you have an injury that caused the lesion? and do you know where the lesion is located? there are some who don’t have ms, but do have lesions, thats why I’m asking that. residuals can act up at anytime, at any strength and duration. Get as much rest as you can, I know thats easier said then done with a toddler, but its important. Stay positive. Take care.
Do you know what your levels were in your lp? just curious.:)
AnonymousAugust 9, 2007 at 1:09 pm
Unfortunately I cant speak to lesions, however I do have a similar story to you. I wont go into the long version though so ask any questions if you want.
I had GBS 85/86, first child born 92, second in 2002. 35 when my son was born and a decline since then. First started with far more fatigue, then pain in feet and hands, weakness some of the time, burning pain and tingling in arms and only sometimes in legs. Went to the ER in 2005 as I couldnt take the burning pain in my arms and I felt my breathing was being effected. MRI’s, tons of blood tests, sleep studies etc (no spinal or nerve conduction test tho). The neuro I went to see said that once GBS is ‘cured” there are no residuals and you dont get it again 😮 ! Have seen a Rheumatologist who said that “all post illnesses i.e. post lymes, post polio, post GBS, present the same symptoms :rolleyes: “. I DO have post GBS, and my family doc, who I tracked down from a few years ago, is willing to listen and try to help me. I take a few meds which do help me a great deal, however Lyrica isnt one of them as the side effects were awful. My mother pointed out to me that it seemed that my decline was noticilbe after the birth of my second child, and looking back, i can clearly see it.
AnonymousAugust 15, 2007 at 11:20 am
I started having [B]sensory loss in my fingers [/B]and toes. Since then I have been through three doctors and finally to a neurologist who specializes in MS. He has done two MRI’s, EMG, blood tests, spinal tap and he hasn’t been able to differentiate is this is a post guillain barre variant issue or if it is early signs of MS…
my website may be of interest to you if you had static-type electric shocks in your fingers as the “sensory loss” became apparent:-
I’d be intersted to know if you also have these blanching patterns.
AnonymousAugust 15, 2007 at 11:43 am
I have a theory you might want to consider. For people who once had GBS & then their nerves remyelinated, those nerves are never quite as strong as their original nerves were at birth. So any trauma to the body, such as childbirth, can temporarily weaken those nerves. Having a baby or a young child is exhausting, & might trigger a “flare-up” of some of the GBS residuals. It could be possible that you just need more rest? I know, easier said than done. I am just suggesting the possibility that there is no new illness, just residuals acting up from when you had GBS before.
BTW where is Underwood? I live in Minnesota as well, up north on the Iron Range in Virgina. Welcome to our forum…
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