I’m interested to know if many other ataxia patients on here also experience restless leg syndrome? I read in a report that 48% of the people with SCA3 in the study had restless leg syndrome.
1 Like
yep, medication didn't help either. I sleep in a recliner for a few hours and it settles down. then go to bed with the wife
I have them too
But medication has helped
Touch wood
Count me in! I don’t have a diagnosis for SCA3, just idiopathic cerebellar disease, but I have restless leg and meds help a little.
Is neuropathy also part of this set of symptoms?
1 Like
Me too! I take Ropinerol and have just started taking calcium and magnesium, they help a little, better with than without xx
I have restless leg. My primary doc wrote for pramipexole dihydrochlor (generic). This drug completely stopped the syndrome. The refill came in month 2 from a different generic manufacture. The pills were pink, not white as they the first month. The pink was not effective, so they switched my back to the white. All good now. I take 2 .125 tablets about 30-60 minutes before I sleep.
Yes me too. Tried amitriptyline. Got me to sleep but was 'foggy'all day. Now I just get up and watch Tv for a while and then try to s.sleep again
Adam,
Here is a PubMed report that says magnesium therapy might help for RLS. RDA recommends 420 mg per day for men.
ive been experiencing restless leg syndrome for a while now but it seems to lesson with movement, i take Amantadine
My dad used to suffer with this terribly and we always said he looked like he was doing River Dance! Mine twitch a bit too when I’m tired, the left being worse. My dad died before a type was determined but the genetics clinic think it’s SCA 4 that I have inherited
Hi Adam
I use Rescue Remedy to help mine - probably says something about my state of mind!
It works!!
Sophie
I drink tonic water at night. t t doesn't taste great, but it works.
I put on a pair of compression socks, especially after a walk or excersize, I find these really help me.
I ran out of my calcium, magnesium, vitamin supplement restless leg came back while waiting for new supply. Now I know it works for me.
PG,
You are the only one I know besides myself that has benefitted from using vitamins and minerals. Most people with ataxia donot give vitamins and minerals a second thought. They would rather suffer their symptoms then try nutrient to lessen the effects of ataxia.. May I ask you how you came to using vitamins and minerals? Can you tell me what dosage and what different kinds of vitamins and minerals you use?
It actually is a Trivita product I was using for strengthening bones (Bone growth factor). It has a lot of different things in it. (Especially calcium n magnesium.) I also take their Essential D product to help with depression. I m sure folks are trying all different kinds of things. Some things help some n not others. We just all do what we can to try to make ourselves feel better.
PG,
This is how I see it when God made man He used vitamins and minerals when we get deficient in vitamins and mineral our body cannot function correctly.
PG said:
It actually is a Trivita product I was using for strengthening bones (Bone growth factor). It has a lot of different things in it. (Especially calcium n magnesium.) I also take their Essential D product to help with depression. I m sure folks are trying all different kinds of things. Some things help some n not others. We just all do what we can to try to make ourselves feel better.
It’s such a pain (pardon the pun) to start to fall asleep and the legs start with a mind of their own. I pop a 800 Motrin . Then things seem to settle down, thankfully.
Yes, I have RLS in addition to Peripheral Neuropathy and Cerebellar ataxia.. I was prescribed Mirapex for symptoms, but I don't really know what it does. The RLS however, doesn't bother me as much as it used to. Basically, my leg moves whenever I lay down. I used to have pins and needles, but that doesn't seem to be present anymore, so maybe the med does something.. The RLS developed after I had broken a bone in my lower leg. I was told to exercise my ankle by rotating it. After the bone healed, I sort of kept moving my foot automatically, and then the other strange sensations came along.
1 Like
I can get RLS it just depends on how much I've done that day. I used to suffer with it just sitting in a chair too I hate the spidery feeling it makes me need to move my legs. However I thought I was a fidget but my husband who isn't disabled drives me nuts with his leg movements he's far far worse on it going as far as shaking his leg for hours at night so I am lucky. I can't have my legs restricted with full on cuddles though during night otherwise RLS hits all the time and I spend the night kicking legs or moving them every 3 seconds to avoid the spider crawling sensation. He's learnt not to cuddle and trap my legs took alot of reminding and prompting but I suspect he has a severe case of it whereas mine is mild.