Help

[Jacqui-A]

After several bloods being taken and an MRI scan I have Cerebella Atrophy and also anti-Purkinge antibodies which can be associated with Cerebella degeneration. I have been told by my neurologist I can eat what I like, is their anyone who can suggest anything I feel quite distraught and alone.

[Pheobe13]

Hi Jacqui -A your illness is it the same as MSA ? Multi system atrophy c ? As my partner has this and it is degenerative and progress just wondered if that another name for it

[Jacqui-A in reply to Pheobe13]

Hello Pheobe13 I don't think it's the same. Autoimmone Cerebella Atrophy associated with Anti-Purkinge antibodies is what my neurologist wrote down. He is putting me on a drip which lasts about two hours and I have to go for five

consecutive days. Jacqui

[february]

Dear Jacqui-A, I'm a 64 year young (ha!) woman, diagnosed at 49 with Sporadic Cerebellar Ataxia (atrophy of my cerebellum/unknown cause), although I had extremely minor symptoms starting at about 43 years of age. Over the years, I had genetic testing for the known dominant and recessive ataxia's, which was negative. Finally, in 2017 I had genetic exome testing and found out my ataxia was due to adult on-set Niemann Pick C disease (NPC). NPC is recessive. Anyway, Physical & Aquatic Therapy have been helpful for me, as well as exercising for strength and balance (safely of course). I also try to eat as healthy as possible (fresh fruit and veggies and little to no processed food). My neurologist recommended I stay as active as possible. Seeing how I'm limited now in what I can do, I try to walk outside with my rollator. I also try to concentrate on what I can still do, not what I can't! I have mini pity-parties at times, but they're short-lived, as things could be so much worse! I try to count my blessings, as there are so many to be thankful for! Remember, you are not alone in your journey! My best to you..., ;o)

[Jacqui-A in reply to february]

Hi February - it's good to hear that you are doing well. You have had ataxia for a few years. I am 68 and I was diagnosed last October and was just coming to terms with it when I was hit with anti-Purkinge a new word. Gluten Free seems the order of the day - thanks to all I will give it a try

[suzie44na]

Hi Jacqui-A, I have heard about gluten free foods helping Ataxias, not sure if this is right though, but maybe worth a try. I do not have a certain diagnosis so I have not tried this myself, although I might try this myself and see how it goes. Wishing you all the best

Suzie

[Jacqui-A in reply to suzie44na]

Hi Suzie, I asked my neurologist about diet and he said to eat what I want but I will try gluten free. Take care Jacqui

[suzie44na in reply to Jacqui-A]

Hi, ask your doctor see what they think, maybe best to ask first.

Suzie

[benning]

CHIN UP??

[Jacqui-A in reply to benning]

I will pick myself up - thanks

[neta]

In 2011,I was diagnosed wïth autoimmune induced CA. I was given plasmaferes 4 five days, which did o; and then 5 years of IVIG, an immuno'=suppressen. But my body got too used to it. I never thought it did much, but my drs thought it did help. xxxN

xx

[Jacqui-A in reply to neta]

I have had one session of IVIg but my neurologist won’t put me forward for a repeat until I have blood test due this month