Loss of sensation

HI! I had GBS in 2001 and not sure if this prob I have was there straight after or not as so long ago. I had like a “dead” spot on my left upper thigh. It has since grown larger and larger. If I touch the patch it has no sensation. If I pinch it is more sore than if I pinch a normal area. If I stand too long or anything it burns almost feels like the muscle is coming apart from the bone. Sometimes when its cold it gets a funny feeling. Also if I rub it it burns. Has anyone else encountered this at all? Really worrying. Thanks

Yes, I have the exact same sensation and affliction though you describe it so much better than I. My onset was in 2005. I too do not know when I first noticed this numnbness in my upper let thing. I do know that I am afflicted more on the left side than the right. I do not believe that it is growing worse, but I am sure that as I grow used to the destruction done to my body I become aware of new things.

Have you had any medication changes that would unmask thid malady or expose it? I know that when I cut my narcotics in half I discovered that my brain stem was strongly affected by pain- almost as if four dozens live wires were hanging from the top of my spine and spouting electrical current.

You aren;t alone in this, no.

Dave Seaman

Hi! You are defintely not alone in that you still have numbness in some areas of your body. I was diagnosed with GBS on June 04,2012. I still have numbness at times in various areas of my body. My main problem seems to be both of my feet. They still feel numb and tingly even though I am walking (very wobbly and staggering). My feet feel like they are wrapped very, very tightly in bandages and it seems to be worse late in the day and at night. When I have been sitting or lying down for an hour or so, I can hardly walk without some assistance. Once I get moving, it seems to get some better but never really goes away and I have a lot of swelling in my feet. I think this is due to the circulation not being very good since the GBS. I have to be very very careful not to fall. When I go out, I still use a cane or a shopping cart in some stores. If the stor is large, I usually get on a motorized cart. Will this ever go away? anyone out there have any more advice on this?

I have numbness in both of my feet. I also have pain up under my rib cage. If I move suddenly, or turn the wrong way, I wake it up and its pretty bad. Whenever I bring it up to any of the doctors, they look at me like I have three heads because "the book" doesn’t say anything about chest pain. I am not sure who wrote "the book" or what its based on, but apparently they need to look deeper into it because there are a ton of misconceptions about this disease, even in the medical community. I know one thing, the chest pain and the numbness started together, and got steadily worse together, and when they partially subsided, that happened together too. I am in my body and I am pretty sure they are related, but if I am wrong, then I have another condition going on simultaneously that nobody has been able to diagnose or even detect.

Ummm I never had a dead spot after mine in 2002 but sometimes my legs are sensitive to touch. Also it will burn if I stand or walk for 30 minutes or more then I would have to sit down and waitfor the pain to go away

I have had those numb spots for 30 years ever since I have the disease. It is worse some days and really bad if I don't get enough sleep. Some thing I;v grown to realize I will have to live w/ it for the rest of my life.

Are the numb spots like numb to the point you can't feel them or is it a tingling numb