Joint/Muscle Pain SCA6?

General
21

I have seen some subtle improvements during my nine months on a gluten free diet; but it appears there is permanent damage. Please do not lose hope by my story as I had suffered with ataxia for 12 years before I started on the gluten free diet just to see if it would help. As you can see from others on this site, no two cases of ataxia are exactly the same in regards to symptoms. For me, I am falling much less than i used to as my head is clearer on the GF diet; and my headaches, while still present, aren't near as intense as they once were. My head was always so inflamed in the past when on the gluten; giving me an intense hang over like headache that made if very heard to think clearly (brain fog). While my quality of life has improved; my ataxia has not really improved at all. Triggers for me are stress, lack of sleep, exercise of any amount and of course gluten. I am a bit short of time right now but would be happy to share more with you if you are interested.

Best of luck, Buffalo Bill

Mom of ataxic said:

Buff, with gluten ataxia, if you never eat gluten again does your ataxia go away? Is it 'repairable'? Or did the gluten cause irreparable damage? Do you mind sharing a bit of your experience with me? I am curious, because my daughter has ataxia and Celiac disease and I would like to know what your experience has been.



Buffalo Bill said:

I have gluten ataxia and suffer from muscle pain and cramping. Am certain it is related to my condition as the muscle soreness peaks when I am having an attack. My neurologist diagnosed me with dystonia; and has treated it with botox injections in my neck which has made a world of difference. Neck had been incredibly sore and stiff but the pain is gone. She says the dystonia causes phantom signals to your muscles; which cause cramping and involuntary movements.

One med that had worked was a muscle relaxer called Lorazepam; but i had to discontinue some time ago as it exacerbated my imbalance issues.

22



Lockie said:

Hi Sarah Jane,
It is just what my Physiotherapist at the local hospital told me. She hasn't any Ataxia patients but has many MS patients that have Ataxia as part of their condition. I have been doing the core exercises for about sixth months, and even though I feel fitter the pains still cut through the painkillers especially after midday.
I know too well about the falling bit, I have hit the wall many times, luckily I have never hurt myself more than a few bruises. It is very interesting that you mention a correct way to fall, I will ask my physiotherapist to show me as I know that one day I won't be so lucky. Thanks for the tip.
My neurologist has said that I have had Ataxia for a long time and it has just begun to be more evident, though it seems to be progressing at an alarming rate.
Anyway it's great to compare notes. Take Care.
23

Hi Lockie

Lets keep in touch..........we sound similar. Am seeing physio next Tuesday and will give you an update if you like?

While i'm chatting, do you fall/collapse onto your knees at all? It seems the safest bet when you realise you are going down but cant be good. There must be something/a way to 'go' that doesnt have potential risks? The patellas can only take so much!

Youve encouraged me to keep going with core exercises, so thank you. Its so easily a case of 'I will tomorrow' isnt it?

I wonder if symptoms seem worse because of getting older? - with 'age-related' tumbles on top of everything else?

Look forward to your thoughts

S-J

Sarah-Jane Squire said:



Lockie said:

Hi Sarah Jane,
It is just what my Physiotherapist at the local hospital told me. She hasn't any Ataxia patients but has many MS patients that have Ataxia as part of their condition. I have been doing the core exercises for about sixth months, and even though I feel fitter the pains still cut through the painkillers especially after midday.
I know too well about the falling bit, I have hit the wall many times, luckily I have never hurt myself more than a few bruises. It is very interesting that you mention a correct way to fall, I will ask my physiotherapist to show me as I know that one day I won't be so lucky. Thanks for the tip.
My neurologist has said that I have had Ataxia for a long time and it has just begun to be more evident, though it seems to be progressing at an alarming rate.
Anyway it's great to compare notes. Take Care.