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Ataxia Support Network

A diagnosis of SCA5


#1

Hi all,

Last year I had my DNA sent to the Netherlands for an up to date diagnosis. The results came back today so I have just been to see my Geneticist who said the diagnosis was not a 100% sure, but I have definite signs and symptoms that lean toward SCA5 .

I would like to know if anyone here has got SCA5 and how they manage it.

Thanks,


#2

Hi Brett :slightly_smiling_face: You can click on the magnifying glass symbol near your profile picture, type in SCA5, and find links to previous discussions.

I have a less than 100% link with SYNE1, which is linked with Recessive Episodic Ataxia. Despite it not being 100%, I find symptoms challenging, progressive and degenerating. You may find that most people, regardless of the type diagnosed, advise keeping mobile as often as possible, exercise often within capability, and try to eat as healthily as possible.

If you feel unsafe due to worsening balance, and your gait is suffering, you might find a rollator beneficial. Personally, I’m much better off holding onto my rollator, it makes me feel more grounded and safe. And, I don’t even need to grip the handles tightly to actually feel more in control, the effect must be part psychological :wink:

A Speech & Language Therapist could be helpful if slurring, or choking are an issue.

If Nystagmus is bothering you, at the moment there is no cure for this. I have read of experimental treatment involving inserting small magnets into the eyes :hushed: This was done at Moorfields Eye Hospital in London (search ‘dancing eyes’). And, there is link to medications that have been prescribed for Nystagmus, on ataxia.org
:slightly_smiling_face:xB


#3

Thanks for the info Beryl


#4

Hi Brett,
I have sca2, ok different from yours, but Beryl is correct. All the physical adjustments, the most important is YOUR HEAD, psychology…Being positive and staying positive despite all sorts of issues…Remember, if the head goes, one had it. Stay warm as much as possible, keep SAFELY active: specialized exercise, balance exercise - rediscover different muscles…I am heavily shortsighted with lowered eye reflex, so no driving for me…There is a different help, depending on your needs. See what can be slowed down (damage limitation). Good luck!


#5

Sorry for the late reply but I don’t visit this site too often

Thanks for the feedback Ladybird


#6

Beryl,

I don’t think that feeling more stable when holding the rollator lightly is all in your head. I find that I feel much more stable when I have some frame of reference. It can be someone holding onto a gait belt or holding my husband’s hand or arm. I don’t need to put weight on him. I find the same thing in other situations,too. I just need the frame of reference. If it is all in your head, it is in mine, too. I suspect, though, it may be a symptom of ataxia.