progressive spastic ataxia

[RazCarver]

doesn't seem to be much going on - on this board. i'll give it a try anyway. i have progressive spastic ataxia and being referred to the movement disorder clinic. i was wondering if anyone has been to one and what to expect.

i have weakness too so i use a wheelchair for any walking at all except the few steps to bath and such at home. i can't find much on this type ataxia and maybe its just a made up kind of working diagnoisis. i know they  keep giving me emg/nc tests.

anyway thought i'd see if anyone knew.
thanks Raz

[AMO]

Hi Raz
I am sorry you have not had any reply , this board is rather quiet ... Ataxia is pretty rare.
A movement disorder specialist sees a variey of disorders and should be able to disquinish what is going on with you ...
but not always!! LOL
They should do a FULL extensive neuro exam.
I hope you have had an mri to see if there is cerebellar atrophy.
There are many types of Ataxia , and ataxia can be a symptom of different things too ... (medicines, m.s. etc)

I hope it has not been too long and you see this post.
I have been under the weather and not arpound as much as i'd      like.
Take care and I will look back if you have posted. Amo

[RazCarver]

thanks Amo, for the reply! sorry you are under the weather. i just took a change someone might be around some time.  I didn't realize ataxia was rare. I've been hanging ot at the MS board until the new neurologist basically ruled that out.

so another neuro exam. getting to were I rather hate them. ha. I'm hyperreflexic so i hate when they test reflexes. they retest and retest like its fun or something. oh well better then the EMG/NCS.

I've been dealing with whatever this is since 2006 so not going to hold my breath that the movement disorder clinic will have answers. not always , as you say LOL.

Thanks for your time Amo!
Raz

[AMO]

Hello   again,

unfortunatly is can be common to take many  many years to figure out what is wrong, then only later to change dx's ... multiple times!

There are some Ataxias that are genetic and possibly show up on a genetic testing ... I dont know how many they have discovered  now , but also they are costly and some ins maynot cover them.
If you 'look' as if to fall into one type they could test for just that?

Hope you feel ok today, Amo

[Kez15]

Hi Raz
I am new to this forum and see that you are struggling with ataxia.  There are hundreds of types if ataxias. I see that you have not had genetic tests performed.  I wanted to let you know that there is a specialist ataxia clinic that is run by Dr Giunti at the National Hospital for neurology and neurosurgery.  You can be seen under the NHS and in most cases Dr giunti will admit you into hospital to perform various tests including genetic tests.  Good luck with everything.

[RazCarver]

thanks for the information

[RazCarver]

that's in UK ? that would be a long way from USA  :-)