Sensory ataxia neuropathy

[Adelaide1909]

Hi, I've recently been diagnosed with sensory ataxia neuropathy. Has anyone else on here been diagnosed with it? Finding it very hard to come to terms with, still having tests to try and find out the underlying cause for it.

[viv112]

Hi..my balance problems were diagnosed as sensory ataxia about 3 years ago. I can't walk in darkness and can't stand still with my eyes closed. It is caused by loss of proprioception in the feet and I also have numbness in my hands. I have had symptoms of peripheral neuropathy for 12 years but the sensory ataxia came later. I have an axonal neuropathy which was shown up by nerve conduction tests. The doctors say it is idiopathic because they don't know the cause. But I have antiphospholipid syndrome (sticky blood) an autoimmune condition and last year one neurologist said it might be connected to that. I will be interested to hear if you find out any cause and if there is anything that improves it for you.....

[rankin1st in reply to viv112]

Hi I would be interested if you have any further information. My hubby also found to have APS link. His mum has sticky blood and his dad has Sensory neopathy with axaxic gait. He has ataxia with APS but still having lots of tests at moment so obviously interested to hear your case is similar

[viv112 in reply to rankin1st]

Hi, I'm sorry to hear that you are worried about your husband. I don't think I can help you really because my health problems are relatively minor and I feel quite fit and healthy at the moment. When my sensory neuropathy was discovered 12 years ago I was told it was probably an autoimmune disorder and so is APS. So I have an autoimmune disorder that affects the stickiness of my blood and my peripheral nerves. I don't know why, and no-one in my family has been diagnosed with similar problems although I have an aunt (95yrs) with rheumatoid arthritis and an uncle (80+ on other side) with ankylosing spondylitis.

I exercise regularly to improve my balance with yoga and tai chi. I avoid vertigo, walking in darkness and stairs without handrails. I take aspirin daily.

If my ataxia becomes worse I would contact a local ataxia centre and equip my home with the necessary aids.

The most important thing to do is to stay positive, enjoy each day as it comes, and not to worry about the future.

Best wishes!

[rankin1st in reply to viv112]

Thanksfor your reply. glad your staying healthy best thing you can do I think. All the best

[auntiesally]

hello Adelaide, I have that diagnoses also, do you have b12 injections? Am in the same boat as you, tryning to find out about it and if it will get worse or not?

Do daily exercises, make sure you have something to hold on to, like your kitchen work top, gentle up and down on your toes, see your doctor and ask for phsyio.

Try to boost your confidence (easier said than done).

Good luck and take care

[Adelaide1909 in reply to auntiesally]

Hi Aunt Sally, no I don't have any injections, do they help? I'll have a go at the exercises' thanks for the tip. I have to go back to the professor I'm seeing on the 30th March. Some days I cant put my foot on the floor without being in pain. Walking anywhere is very painful and difficult, do you find that too?

[auntiesally in reply to Adelaide1909]

Hi

I am going to see my nueroligist on 23rd March, b12 give you energy and can sometimes be the cause of sensory ataxia, I had blood tests that showed my b12 levels were low, I dont have pain walking, but a couple of years ago I had an awful pain in the ball of my foot when standing or walking, this has gone now, I did change my footwear, totally flat sandals or ballet type shoes are a no no, skechers trainers are sooooooooooo comfortable, primark sell lookalikes at a fraction of the price, I have a bathboard, and 2 grab rails for the shower, which is great, ask your prof about the pain you are getting, oh and ask for a b12 blood test, you have nothing to loose,

take care,

[kuchee in reply to auntiesally]

Hi Auntiesally

I have sensory Ataxia having similar symptoms.

I have few concerns, i am wondering if having answered?

a) what should be range for b12 in body?

b) what if we take vit b12 by mouth? will it be the same as injection?

c) what amount of vit b12 can be adjustable in body. I mean what if it is exceeding the dose?

I take;

aceytle.l. carnitine (amino acid)

Gabapapentine

CQ10

Vitamin D.

I will ask my MD for b12 absorbancy with above regimen!

thanks for reply.

[auntiesally in reply to kuchee]

Anything below 220 I think, not sure about other questions, I have now been diagnosed SCA2. Hope your well.

[Hidden]

Hi Adelaide. I was looking up sensory ataxia and came across your post of six months ago. I wonder how you’re getting on now and if you have learnt of the cause?

In my case I’m new to the possibility of Ataxia as cause of some of my symptoms but I have Sjögren’s Syndrome and Hypothyroidism so I’m very autoimmune. My B12 levels are high and no other vitamin deficiencies and all is quite a recognised aspect to Sjögren’s - which can present very like MS for some long before the dryness of eyes and mouth become severe, although I have these too. It may be worth looking Sjögren’s up as well as APS - which I may have too. practicalneurology.com/2017...

[Adelaide1909 in reply to Hidden]

Hi, mine is caused by vasculitis . Have been on steroids, now just taking pregabalin.

[Hidden]

That’s interesting - I’m just on Pregabalin too now after years on steroids and disease modifiers. How do you find it? - I worry about the zombie effect it’s giving me.