[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

[azoyizes]

Welcome to NeuroTalk, nanaj! This is a great place with many forums, and with lots of friendly and helpful people.

Here is a link to the Arnold Chiari forum. Best of luck to you.

http://neurotalk.psychcentral.com/forum71.html

[MelodyL]

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

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

[Kitty]

Hello and welcome to NeuroTalk! Like Melody said....I hope you catch a much deserved break soon. Glad you decided to join us here.

[DM]

Hello nana and welcome to NeuroTalk. Sounds like you've got a pretty full palte there. My darling niece has Chiari's and suffers w/so much pain from it. She is contemplating surgery this Summer, but is fearful of the recuperation period and overall outcome. I'm glad you found us and hope you check out our many forums and join in anywhere.

[ali12]

Hello and Welcome to Neurotalk, Nanaj!! It is great to meet you although i'm sorry you have to be here!! Everyone is so nice and friendly here and I am sure everyone will try and help you if they can!!

I'm so sorry to hear about everything that you and your family are having to go through right now! I'm not familiar with the illness you suffer from but I do hope that things get better for you real soon and am keeping you all in my thoughts and prayers!!

If you need anything, please don't be afraid to ask!! I am more than happy to help you in anyway I possibly can and i'm sure others will be also!!

Take care of yourself and I hope to see you around the forum more real soon!!

Alison

[FranksAngel]

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again