Episodic ataxia w/ myokymia

[popepjp]

Hi my name is Pam and I have been diagnosied with Episodic ataxia w/ myokymia around 10 years ago, but had it since I was 15. All the medicine my Dr has tried does not work so on muscle relaxers, things are getting worse and my legs are getting weaker and having alot of chest wall pain, plus other things. I hope I can learn some stuff about this from everybody.

[february]

Dear Pam, A HUGE welcome to this site! I'm afraid I've never heard of myokymia, what is it? I do know about ataxia though! I don't have episodic ataxia, as I was diagnosed with Sporadic Cerebellar Ataxia thirteen years ago (unknown cause, progressive, symptoms 24/7), although I had very minor symptoms starting about eight years before diagnosis. I do not have any chest pain, is that from your myokymia? I try to keep my muscles strong by exercising for strength and balance. I do a lot of floor work, because there's no chance of falling if I'm down on the floor...,ha! When I exercise while standing, I must hold on to something sturdy! My balance is highly compromised! When you have ataxia muscles tend to get weak due to the signals from the brain (slow) and our gait (stiff). That's MY theory, anyway! My best to you..., ;o)

[popepjp in reply to february]

The chest wall pain is do to my muscles,and myokymia is tremors

[wibblywobbly]

hi and welcome to the site,

I have a genetic sca so far which gene is unknown.

the main thing with all ataxias seems to be to keep exercising and doing things. We must use it or lose it! The muscle loss seems to happen very quickly, and also some muscle relaxants can also cause muscle loss - though I don't know anything about the meds you are taking and I'm def not a doctor. The other way to manage the muscle contraction is stretching. I see a pt twice a week and at the end of each session he stretches me and massages me.

I was recently visiting family for one month and my loss of strength and contracted muscles was pretty severe. It's the longest I've been without seeing my PT.

So my advice is keep doing things, exercise and stretch. Ask your gp to send you to a PT.

good luck and I know it's really hard. Sometimes I can hardly get across the room.

love

Alison

[popepjp]

I try when I'm sitting i stretch my legs