Losing feeling

[bevvick1964]

In the last few weeks I’ve been losing the feeling in my fingers

I’m in a lot of pain in my joints too

I have SCA6

I’m so fed up!!

[Hidden]

Hi there. I have most much sensation in my finger tips now. I don’t presently have much pain in my joints though. Have you had autoimmune conditions excluded properly ie seen a rheumatologist? My problems and Ataxia are due to a rheumatic disease called Sjögren’s which is very like MS for me. It would be worth getting your doctors to investigate if they haven’t already.

[bevvick1964 in reply to Hidden]

I’m going to my doctor tomorrow but it’s more muscle pain around my joints and losing strength in my legs x

[Hidden in reply to bevvick1964]

Yes I do have problems with my legs and arms - particularly my left knee. It keeps giving way. I hope to ask my consultant about this next month because a physiotherapist was sure I am hypermobile and this could cause problems. My neurologist describes mild Ataxia in her letter so I’m really not sure.

[bevvick1964 in reply to Hidden]

I have sca6 inheritance from my mother

I’m getting worse quite quickly

[Hidden in reply to bevvick1964]

Sorry I am new to Ataxia and don’t know much about the types or genetics yet. I just responded to say that I can relate to the numbness in fingers very well. Mine seems to be related to a systemic autoimmune disease and related small fibre neuropathy.

link.springer.com/article/1...

[bevvick1964]

There’s loads of types with all different symptoms but all equally horrible.

Thanks xx

[Hidden in reply to bevvick1964]

Tell me about it! I’m currently in bed with internal tremors throughout my body and mini seizures. Am told by out of hours GP I have viral labyrinthitis or Menniers but never sure what’s causing what - like living in a sci fi drama! X

[bevvick1964 in reply to Hidden]

Oh how awful

My friend had that and she was ill for months but she’s ok now. Chin up x

[Hidden in reply to bevvick1964]

Thanks - it’s kind of awful but it relapses and remits usually unlike the other stuff relating to Ataxia. The snow is pretty bad here so it’s forced me to rest up and also take related meds so things are starting to feel better at last. Back to my usual long term degenerative condition at least! 😎🙃🙄

I’ve just posted here with a list of longstanding symptoms to see which might come under the Ataxia heading. My form is called Ganglionopathy I think?

[bevvick1964 in reply to Hidden]

Have you been fully diagnosed?

I was diagnosed in 2013 after 3 years of testing then genetic tests proved it

I’m now fully disabled l lost my job and my independence can’t drive anymore and now suffer chronic depression

Lovely 😊

[Hidden in reply to bevvick1964]

You poor thing - I can relate. I have not had any genetic testing at all. I would really like some as both my parents died of heart failure suddenly and prematurely and both my younger sisters were born profoundly deaf - no one knows why. I also think I may have hyper mobility disorder contributing to my balance problems and poor gait but all this is educated guesswork. It would be good to get genetic testing done I think but I’d need to be referred. Not sure my rheumatologist would agree as I’m under lots of specialists already.

I am diagnosed with a degenerative rheumatic disease which can cause something called ganglionopathy as part of the systemic process. My neurologist (who entirely lacks compassion/ sympathy) has stated “mild ataxia on heel toe testing).

I am similarly disabled by my progressive Sjögren’s as you describe yourself by my form of Ataxia. I have lost my physical independence due to the multi system attack - which is almost identical to MS for some. So I’m diagnosed with a system wise rheumatic disease rather than a hereditary ataxia so far. Always wondering if I have both though.

[bevvick1964 in reply to Hidden]

Get your gp to refer you to one of the Ataxia centres

[Hidden in reply to bevvick1964]

Okay will do thanks but I need to wait as my doctors are all more focussed on the immediate stuff like controlling my BP and kidney problems. X

[viv112]

Hi I have APS and also have numbness in my hands and feet. The neurologist says I have sensory neuronapathy but I do not have Sjogrens so it is considered to be 'idiopathic'. I can cope with the numbness in my fingers but the numbness in my feet has been getting worse and has affected my proprioception. My balance is affected and I can't walk in darkness. The numbness in my fingers started 12 years ago and my balance has deteriorated over the last 5 years. I was referred to a physiotherapist recently who was very helpful. The doctors don't know or understand why I have these problems or believe there is a link with APS. There is a lot more research that needs to be done on autoimmune diseases.

[Litty]

Sorry you are feeling so bad and in pain. I have SCA1 and luckily it is not too painful.

Do you have a good GP? x