New member question

[Stacey214]

Hi all ,I have recently been diagnosed with an immune mediated type of ataxia .i am new to the community and wondered if anyone could tell me does that mean it's genetic ?thanks

[neta]

I have autoimmune induced CA and have taken 25 grams every six months for two years of IVIg. I don't see an improvement but my neuro says w/o it, I could be worse. There is a dr. in GB who knows alot about this. His name is Dr.. Mario H. He's in Sheffield. I am not sure if this condition is genetic. I think not but an immunologist did mention to me that I have a very pronounced "autoimmune case" based on my family's various autoimmune conditions. My brother has a very mild case of Reynaud's Phenomena; my mother, alopecia areata, my sister take a thyroid drug. All of these are very autoimmune based. Unclear what this all means for future generations.One neuro did tell me that in 20 generations, I have a chance of having an offspring with a harsher and earlier case of CA.. But this has never been said again. I have high levels of the GAD antibodies and ANA's.

[Stacey214]

Thankyou for your reply Neta,I am now under Dr Marius care at Sheffield but have only seen him once with my scan results ,I had bloods taken and they wrote to me and said it was immune mediated type but I am awaiting more results that will hopefully tell me which type .I do not see Marius until July ,so I feel a bit confused as i have no real answers.Thankyou

[february]

Dear Stacey214, Although my ataxia is not immune mediated, I just wanted to welcome you to this site! My best to you..., ;o)

[Stacey214 in reply to february]

Hi February,Thankyou for kind welcome.I was nervous about writing on the Ataxia community,but you put me at ease. it's nice to know that other people understand what your going through no matter the distance between you .Thankyou

[february]

You're so welcome, Stacey! There are wonderful people on here for support and understanding! As I live in the US, I'm also on the Living With Ataxia site here. Check it out! I go by "Rose" on that site! Until I started looking at these two sites, I never realized there were so many others with ataxia! Made me feel less alone with this! Hugs, February...,;o)

[neta]

Right Stacey. I have been in touch with Dr. Mario by email and would like to see him. He answered me positively but since I am not a Brit, its complicated with NHS stuff. Still not sure they r right about my diagnosis. But my neuro is pretty top drawer so who am I to argue. By the way just saw your email now..