SCA: I was diagnosed with Spinal Cerebellar Ataxia... - Ataxia UK

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berejena profile image
12 Replies

I was diagnosed with Spinal Cerebellar Ataxia about 30 yrs ago. I have all tests known to man except one where a piece of muscle is taken from your leg, I've agreed to this but don't know when. The professor I see can't understand why my cerebellum is shrinking faster than normal, my reflexes are very strong. Is there any other person out there, if so please get in touch!!!

Keep smiling

Berejena 😀🌻

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berejena profile image
berejena
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12 Replies
Cunningham1960 profile image
Cunningham1960

If you're having trouble with your balance, your muscle biopsy is better in your arm

john61 profile image
john61

They took mine from my arm under a local anesthetic I didn't feel a thing.

TELEEN profile image
TELEEN

Hi i have had sca 2 for 18 yrs and i know nothing about this test,i thought that the cerebellum shrinking was what this thing is all  about!and that as it's progressive you cannot know how fast or slow this will happen!!

Sunny8088 profile image
Sunny8088 in reply toTELEEN

Agree with Teleen

HarryB profile image
HarryBAdministrator in reply toTELEEN

Hi TELEEN

Muscle biopsies are usually done as an investigation in people with idiopathic ataxia, i.e. the underlying cause of the ataxia is unknown, to try and find a cause.  A problem with muscle function which would show on a muscle biopsy is known to cause progressive ataxia.  As you already know what the cause of your ataxia is a muscle biopsy is not necessary for you.

Harriet

TELEEN profile image
TELEEN in reply toHarryB

Oh thank you yes i understand now,that's the difference i know the origins of my Ataxia.Thank you and good luck for the future...Eileen.

Iain_100 profile image
Iain_100 in reply toHarryB

Thanks for this info Harriet.

Yes, it makes sense. I'm very surprised that this was not suggested to me. I've had a million-and-one other tests, and no cause has been identified. So I would have expected this to have been a further test. Perhaps the docs don't know about this test?

And I can kind of understand why a biopsy of leg-muscle tissue has been suggested to berejena. I'm guessing, that like me, berejena only has real problems with the legs.

Perhaps I really should get tested at an Ataxia UK clinic?

Iain

berejena profile image
berejena in reply toIain_100

Yes you should Iain, don't know where you live.I don't just have leg problems also lots ofotherthings. Ii have Dystonia as well, in my neck & shoulder. (Involuntary muscle spasmkeep well

Berejena

HarryB profile image
HarryBAdministrator in reply toIain_100

Hi Iain

I am surprised a muscle biopsy hasn't been suggested to you but it might be that the doctors think that with the symptoms you have, a muscle biopsy would not be indicated.  The best person to ask about this would be your neurologist.

If an individual has a specific muscle disorder all their muscles will show signs of that disorder, irrespective of where the symptoms are most prominent.

Harriet

Iain_100 profile image
Iain_100 in reply toHarryB

Thanks Harriet!

I'll ask the next time (although it will have to be via my GP - as I'm only seeing a physiotherapist now).

I have only recently noticed a tremor in my left arm, but it's nothing really. My arms are, generally, unaffected (even as my legs continue to deteriorate quite noticeably). So much so, that the neurophysiologist that I saw jabbed her needle/electrode into my shoulder - as the signal from my legs was so bad that she thought her machine might be on the blink. The signal from my shoulder was fine though, so her machine was working fine.

celtic1888 profile image
celtic1888 in reply toTELEEN

Me too

celtic1888 profile image
celtic1888

Never heard of this process. I'll be emailing my neurologist.  Hope it goes well for u

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