Deteriorating

[Shenka]

Hi all. I've learned the term ataxia from the internet. In recent months I've dislocated and fractured my shoulder and on another occasion broke a bone in my foot. A few years ago i toppled and broke my wrist. I have autoimmune thyroiditis but not sure if this is related. My sister also has balance issues and thyroid problems and in very old age our mother staggered about. I'm now 68 and this has become progressively worse. Falls clinic referral found low B12 so having 3 monthly injections. Recently if I'm really off balance I've found my speech affected too, as if i were drunk! It's getting to a point where I'm feeling really lost. Has anyone ever experienced symptoms like these at my age? Please help

[penelope2]

Hi Shenka,Firstly these are very confusing symptoms and I can relate to how worried you are.

Realistically it could take many years for a diagnosis of ataxia. It sounds like ataxia symptoms to me, I am about the same age as you and the Ataxia symptoms started about 13 years ago and it took 9 years for UCLH to give a definite "it is cerebellar ataxia" but what type they could not say despite extensive testing.

After going gluten free and private testing out of desperation I self diagnosed and now under Sheffield clinic and Professor Hadjivassiliou.

Speak to the Ataxia UK Helpline they are good.

Do your own research, read as much as possible, read research papers, speak to as many as possible.

The book "Why is my brain not working" is informative.

BUT the wheels of the NHS in relation to ataxia turn very slowly so you must be proactive, as the cerebellum can degrade and atrophy will happen over time if you have ataxia.

In the meantime while waiting for a diagnosis research gluten ataxia and if you think this could be your symptoms then iwould recommend trying a GF diet to see if it helps your symptoms. It must be 100% though. There is no medication just difficult to change your eating habits and do it for a few weeks. Within 2 days I knew it was making a difference to me.

But be aware that not everyone will agree that gluten cannot cause ataxia.

Good luck.

[penelope2 in reply to penelope2]

I meant eating gluten CAN cause ataxia!

[jomo50 in reply to penelope2]

???

[Ostap in reply to penelope2]

Has your self diagnosis of gluten ataxia been confirmed by Prof Hadjivassilou?

[penelope2 in reply to Ostap]

I am under the care of Prof Hadjivassiliou at Sheffield and at the first appointment I had been GF for over 1year at 100%. We discussed me going back to eating gluten for a TG6 test which I declined and he could appreciate where I was coming from.The tests at my next appointment confirmed no autoantibodies but atrophy of the cerebellum.

The letter that summed up the consultation said I "probably" had gluten ataxia. Good enough for me as I know how my body feels.Interestingly he said that many of his patients self diagnose.

Good luck.

[7151]

Yes sorry to say its ataxie Battle on we have to live with it ..it could be worse take care x

[Driven1]

Same problems, broken wrist from tripping, broken ankle from slipping, torn shoulder tendon, from falling, smashed face from tripping etc etc etc. Now learned to fall by rolling and not trying to save yourself. Much less damage, walking stick helps a lot as well. Walker coming up soon

Use vitamin B12 spray into mouth daily