[have.to.fight]

hello,

I was diagnosed about 6/7 months ago with ARSACS (autosomal recessive spastic ataxia of Charlevoix-Saguenay) I was just looking for other who have it or another conditions who can relate to some of my daily struggles

[Lara]

Hello and welcome to the NeuroTalk Support Groups.

I'm sorry to read about your diagnosis. I can only suggest posting on the

Movement Disorders Forum

or

General Health & Rare Disorders Forum

You could also try using specific keywords in the forum search feature.
e.g. Ataxia or cerebellar ataxia

I just tried quickly using ARSACS and Charlevoix-Saguenay but I didn't find anything.

Forum Search Feature


If you have Neuropathy as part of the symptoms, you could also check on the 2 forums I've posted below as you may find some tips to deal with your symptoms on a daily basis.

Peripheral Neuropathy Forum
It also has a subform for
PN Tips, Resources, Supplements & Other Treatments

All the best to you.

[kiwi33]

Welcome to the community - I hope that you find it as knowledgeable and supportive as I have.

I am sorry to read about your diagnosis. You might find the info here helpful - it includes links to support groups; http://ghr.nlm.nih.gov/condition/aut...evoix-saguenay .

All the best.

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[February]

Welcome. I have been fighting neuropathy and everything that prevents me from being well, so my husband says, for almost 7 years.

I was diagnosed with Guillian Barre Syndrome. I had relapses and was diagnosed with a rare form of the chronic type of GBS. It is called MADSAM. It means multifocal, (everywhere), acquired, (not genetic, but in my case unknown), sensory and motor.

It's a demyelinating polyneuropathy. I have axonal damage. It's progressive unless the medicine works fully, which it doesn't, or I can figure out the cause, I haven't conclusively but still trying.

I understand the struggles. I also know the triumphs. I have found lots of ways to keep the myelin as healthy as possible and my spirit too.