Is it possible to have a remission?: My son seems... - Ataxia UK

Ataxia UK

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Is it possible to have a remission?

klazien profile image
7 Replies

My son seems to have that with Ankylosis spondolisis.For several years now he has not taken any medication and has not had not had any pain either. The damage from before is still there.

Could there be something similar with ataxia?

I deteriorated very fast in the beginning, into a wheelchair within two years, than much slower and for the last few years there has only been a detoriation of my speech and swallowing. It would be great if it stopped now. Is that possible?

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klazien profile image
klazien
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7 Replies
wobblybee profile image
wobblybee

Hi Klazien,

i'm sure lots of us have thought, if this condition would just not get any worse than

it is now, I could manage to get by.

My own condition has varied, seems to come in cycles and has gone on now for about

20yrs in one form or another. I feel as though I'm having a sort of 'ground hog day' experience, I have to come to terms with the situation repeatedly.

All tests for a specific type of SCA were inconclusive, although an MRI did show

atrophy of the cerebellum.

During one test I lost control of my legs completely and couldn't stand unsupported,

this was induced by a procedure at the Falls and Syncopy Clinic.

I agree with you, it would be great if things didn't get any worse.

Best regards

Beryl

Fifa profile image
FifaVolunteer

+Hello

It woul be nice if this condition did not get worse but it does. Mine has really taken off. In 5 years I am worse than my friend who has lived with the condtion for 40 years.

I think we all dream of remission.Sorry!!!!!

Take care

Fifa

silkwood profile image
silkwood

My Neurologist said my Ataxia could plateau.The progression is quite rapid.I have gone from speaking and walking 5 years ago to not being able to speak or walk.I thought plateau was good news especially for the young. The Neurologist had seen even aggressive Ataxias,halt for a bit.Good news for your son maybe klazien.

klazien profile image
klazien

Thank you for your answers. Maybe I'm getting to a plateau. One can but hope.

february profile image
february

I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago. It's progressed, but very slowly. I use a cane when I leave home to prevent falls, but do not use it in my home. I continue to do exercises for strength and balance and will continue as long as I can. I figure if I don't use it, I'll lose it! My neurologist also said ataxia can plateau, so I figure I'll be as positive as possible! ;o)

brossi65 profile image
brossi65 in reply tofebruary

I've was diagnosed little over a year ago. I have gone from walker to crutches and now a cane (like u). This has happened since I started to exercise...Like you. Started with just doing isometrics to help strengthen my muscles. I went from sofa, to chair and standing holding on high table and kitchen counter. I tske vitamins and supplements and eat healthy food. I also meditate daily to rid myself from the anxiety this health issue and how it progressively it disables from your daily life. I'm so happy you are doing well, too. We can only hope and pray what we're doing for ourselves becomes or salvation. My Neurologist said therapy usually doesn't work. Doing it on my own, I'm hope to disprove him, lol. Have a great life in all that you do. Let's pray we never give up in our dealing worth it :)

wibblywobbly profile image
wibblywobbly

Hi, I was diagnosed three years ago with Spino Cerebelleux Ataxia (SCA). I have deteriorated quickly in that period. But speech not affected too much yet. My neurologist also said that it can plateau so I am always hoping. I felt that it did plateau last year - but really was only for a few months. At that point I felt I could actually make some progress at my physio sessions and felt very positive. Have to just adapt and accept each stage as it comes. But always hope of a plateau

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