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General
1

I..

2

Have youbeen to the UCLA clinic or have youasked the wonderful people at NAF for experienced Neurologists in SCA in your area? Have you talked with your insurance provider for an experieced doctor for your condition inyur area?

3

I have found that none of these tests do much for the patient. It seems like going thru the motions to update your decline, they can’t even predict how far you will decline or how fast…
Ray

4

I am skeptical too and have declined to have any more. It may help them to acquire meaningful statistics for their research by monitoring decline but... I have had enough.

My understanding is that the cerebellum doesnt shrink in many cases but ones ability to cope with the symptoms gets worse as we get older.

Patsy [UK]

5

That is why you see a real ataxia neuro. I have never had a spinal tap. That's a prime example of a neuro that hasn't a clue about ataxia grabbing at straws

6

I asked for and got a tap about 4 yrs ago and it never showed answers.

7

You have to ask your doctor why those tests are required. My thought is that they are looking for something different so they can tell you something new. If nothing is different with you, those tests will be the same as they always have been. My husband's neurologist is a no-frills kind of guy and told my husband, which has ataxia, that if something changes fast or insurance needs some sort of paperwork done, to enjoy life and not worry about all the extra tests that could be run and really tell nothing. I would sincerely question the frequent spinal taps....they are painful and the chance of becoming positive for something when you have no added problems is almost none.

8

..I wont give medical advice b/c I'm not a doctor..But I'm a well heeled "Ataxian"..lol..

..get a 2nd/3rd opinion...

9

..yup! I get the picture..I've had three 'nuros'..I been pricked,prodded,zapped..The last visit was told well might see you in a few

years,then!!??..please pay at the reception desk...I'm only going to' search' (pardon the pun) this site from now on ..

..It would seem that only us and real close friends are going to get the medical world to take/research Ataxia as a serious and some-what,

bewildering disease..Hang in there folks..


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Kit said:

You have to ask your doctor why those tests are required. My thought is that they are looking for something different so they can tell you something new. If nothing is different with you, those tests will be the same as they always have been. My husband's neurologist is a no-frills kind of guy and told my husband, which has ataxia, that if something changes fast or insurance needs some sort of paperwork done, to enjoy life and not worry about all the extra tests that could be run and really tell nothing. I would sincerely question the frequent spinal taps....they are painful and the chance of becoming positive for something when you have no added problems is almost none.

11



ME JANE said:



Kit said:

You have to ask your doctor why those tests are required. My thought is that they are looking for something different so they can tell you something new. If nothing is different with you, those tests will be the same as they always have been. My husband's neurologist is a no-frills kind of guy and told my husband, which has ataxia, that if something changes fast or insurance needs some sort of paperwork done, to enjoy life and not worry about all the extra tests that could be run and really tell nothing. I would sincerely question the frequent spinal taps....they are painful and the chance of becoming positive for something when you have no added problems is almost none.

12

Why does he want to do the spinal tap? I have never heard of any ataxia that was diagnosed using a spinal tap.

If you've had other neuros do spinal taps and they were clean, maybe you don't have a neurological condition and you should see your family doctor.