Students

[Jacqui-A]

Hi all, I have been asked if I would attend a Medical School based in the hospital I attend if it helps the future generation why not.

I was put forward for IVIg treatment in January and I’m still waiting has anyone else had this treatment and if so did it help?

I have Cerebella Atrophy only diagnosed last October after knowing something was wrong and the last couple of days haven’t been good. I could manage to get around indoors unaided but these past couple of days I’ve noticed a big change in my balance and coordination and when I’m out I feel people are looking at me, it’s very upsetting.

My neurologist said it was nothing I’d done ie: lifestyle but something that has been creeping up for years.

Jacqui

[isabelalfaiate]

How I know how you feel, I am still embarassed of my condition and too embarassed to use a walking stick. Inside my house I manage very well unaided, if I need I use walls and furniture for support. Outside I hang on to some one, but I feel that people are looking at me and may think I am drunk. I have never drank any alcohol. I have also been asked to be part of a European study. However they only take blood samples and I do various cognitive and equilibrium tests. They have not asked me to take anything. I am coeliac and am not prepared at the moment to take anything. I have been diagnosed with SCA3.

best wishes

[BrettDarby in reply to isabelalfaiate]

Hmmm, try not to be embarrassed, but I've been there myself and know it's not possible. Sadly, for me, it's only when I was forced to (use a wheelchair) that I opted for one; and, surprise surprise, it was a relief not to be wobbly in public.

[isabelalfaiate in reply to BrettDarby]

Thank you, for your advice. I am not quite ready yet but I will get there, I have no option. I will cross that bridge when I get there, for now I will not worry

[BrettDarby in reply to isabelalfaiate]

I would say Good Luck, but I don't believe in that. Keep fit, and pursue what you enjoy--there, how's that!

[Jacqui-A in reply to BrettDarby]

Well said! BrettDarby

[BrettDarby in reply to Jacqui-A]