gluten attaxia

[golfingsue]

Hi I have gluten ataxia,does anyone have aching legs when standing for few minuates

[wobblybee]

🤔 It’s likely that aching legs after standing isn’t only related to Gluten Ataxia. That isn’t my diagnosis, but I’m experiencing similar. In my case I think it’s the result of lengthy bouts of inactivity catching up with me. This didn’t use to occur while I stayed reasonably mobile and active, but as ataxia has progressed my situation has changed.

But, it’s always worthwhile discussing this with your GP to rule out any other causes.

[Amynah]

Hi I have SCA1 and same as you, so it's only gluten ataxia.my ankles and knees hurt and jerk and I loose balance, I guess it is ataxia progressing. I try to be active when feeling better, so exercise helps. Maybe you can talk to your physio. Good luck.

[golfingsue in reply to Amynah]

thanks

[Amynah in reply to golfingsue]

Hi again, I was waiting for my virtual physio appointment yesterday and she looked at my walking on video and said that I had mild knock knees. She gave me exercises to correct this. No wonder I have so much pain when I am standing, etc. You have same... So do see a physiotherapist and I am sure she will help you. This is very personal so do get a professional opinion before doing anything. Regards amynah

[golfingsue in reply to Amynah]

thank,I had an appointment with my orthopaedic this week for knee & hip & he injected my knee.That has really helped but he said i will have to have new knee eventually,

[wobblybee in reply to golfingsue]

😕 I have an Ataxian friend with Bursitis in her knees, she’s been reduced to using a wheelchair prior to having injections.

[penelope2]

Hi, searching through website and saw your post. I have ataxia, not sure what type, have been referred to UCL but it is postponed until ???? Out of desperation I went GF 1st Sept. Initially very positive results, fatigue lessened, brain fog lifted and balance improved slightly. Have seen it could take 1/2 years to improve unless there is permanent damage to cerebellum so could just stabilise things.

But I too had really painfully tired legs prior to ataxia but I just carried on and worked through. Wonder if this was like chronic fatigue that led to ataxia. I also have a vestibular dysfunction and this might have been caused by a virus. This was about 20years ago and different to the fatigue caused by ataxia. I also get like chills and goosebumps that started up before this.

How are you now and were you diagnosed with gluten ataxia? Are you still gluten free now.

Take care x