And I know there might be other things like back issues going on, he DOES have spinal stenosis but every back guy who took MRI's and examined him always said "it's not his back".

He was diagnosed Idiopathic (like many of you have been) over 20 years ago. I would keep telling the doctors "His mother had Guilliam Barre Syndrome, maybe it's connected to that?" and every single doctor shot it down.

Yesterday I watched a video on a 26 year old woman who had given birth and 3 weeks later, woke up paralyzed from the neck down and was diagnosed with Guilliam Barre Syndrome. It took her 120 days from day of diagnosis (with all the tingling, and paralysis and pain, etc) through 120 days of intensive treatment which included intensive therapy to get her hands working and the muscles in her legs working. She gradually went from complete paralysis to a wheelchair, to a day outing, to using a walker and at the end of the video she's doing intensive fitness workouts (as if she never had been ill).

Then I began to think. Alan's mother got diagnosed at age 45 with
GB. Alan got neuropathy at age 45. Alan's sister (even when I asked her years ago if she had neuropathy, she would always say no) then years later she would go "Oh, yeah, I have it, my toes are numb, I get trigger point injections, etc.

So (and this just happened in my head) I put the whole thing together.

What if there is a virus that all three of them were exposed to. Alan was 14, his sister was 17 and the mother was about 45. What if the virus in his mom's body caused her to develop GB at age 45? What if the same virus lay dormant in Alan's body all those years. When Alan was around 33 he became ill, had to be hospitalized and they never put a name to it. They called it 'Fever of Unknown Origin". They kept him in isolation for one week. He then came home and rested at home for one month. He had a low grade fever. Kind of like a Mono thing but it was never given a name. At age 45 he developed neuropathy. Years later his sister developed her own version of neuropathy.

Is this a possibility? Might they all have been exposed to a virus at the same time, that entered their bodies, either progressed or lay dormant (or mutated) and could THAT have been what happened?.

Comments??

Thanks Melody

It sounds plausible to me.
It could have even been something in the home, the water, toxins in that area..
Or perhaps a random genetic thing.. but then some older relatives might have had similar dx's..

I wonder if I might ask his sister if she knows ANYBODY on Alan's side of the family who has had similar symptoms, neuropathy, etc.

Will update if I find anything.

Hope all is good at your end. We are freezing here in Brooklyn, NY lol

Mel

We are unseasonably warm on the west coast.. Oregon/Washington. I feel for everyone on the east coast enduring those frigid temps..and for such a long time..

Hi, Guillan Barre, usually is an acute autoimme condition, brought on by C.Jejuni, or some viral infection. it usually takes days to weeks to show, weakness, pain and parylysis is one of them. If your husband never had any of these symptoms, he doesnt have gb. gb takes days to weeks to become fullblown, then it takes weeks or months to recover, did your husband have a recent viral infection, or C jejuni infection

Hi, never said I think my husband has GB. He has had Idiopathic PN for 23 or so years. He did have a fever of unknown origin 33 years ago and was put in Isolation for one week in the hospital. The reason I originally posted was not that I think he has GB but since his mom had GB and his sister had been diagnosed with neuropathy I thought that perhaps there was a common virus or pathogen or toxin that they all might have been exposed to.

Oddly, his sister just phoned me in response to my query. She said "All I know is that we have a relative in Chicago who had MS but she is no longer living. That's all the info she could give me.

Oh well, it was a thought.

Thanks anyway

Melody