Quote:
Originally Posted by nanaj
First time posting here. I've spent many hours in the past 4 years on a Guillain-Barre site. Was diagnosed in 2004. Since Oct. 08 I was introduced to a new site for Chiari 1 Malformation. Seems I've been dealt a double whammy. Two rather unusual and somewhat rare nerve related disorders.
My mother has Parkinson's and my sister was diagnosed with MS over 40 years ago. So I'm thinking there is a definite predisposition for neurological disorders in the family. Hope it isn't one of the traits I passed on to my adult children.
Am still recuperating from brain surgery to slow the progression of Chiari.
Looking forward to connecting with those who understand.
nanaj
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Well hello there:
Just wanted to extend my warmest welcome.
My husband has neuropathy.
My husband's mom had Guillian Barre and my husband has CIDP which stands for Chronic Inflammatory Demylinating Polyneuropathy. For 18 years we told every doctor that his mother had Guillian Barre and asked the same question TO EVERY DOCTOR.
We asked "Can Alan's neuropathy be in any way, shape or form, related to the fact that his mom had Guillian Barre?"
Every single doctor said "of course not, it's not connected at all, and they ALL pooh poohed it."
Some time ago, when my husband was diagnosed with CIDP, I went to the website that explains CIDP.
Guess what it said? "It's a variant of Guillian Barre".
18 years of nonsense.
I asked a doctor last month and said "how come it took us 18 years to find this out?" and the doctor said "Listen, we are still learning".
I hope they learn soon.
And I hope you catch a break. You deserve one.
Take care,
Melody