Loss of sensation in hands - anyone else?

[MaryRH]

Just wondering whether this is ataxia related - presumably sensory or peripheral neuropathy - or not (essentially do I ask now or wait and bring it up when I next have a routine neurology appt).

For years I’ve had impaired sensation in my hands and forearms and I’ve put it down to calloused, desensitised skin because I cut and burn myself so frequently. When I burn myself cooking I do 10 mins under running water because rationally I know what the consequences are, not because It hurts.

Last time I had the wrong bit of my arm under running water (the resulting wound not pretty) and this week I’ve cut my fingertips twice (it’s only Tuesday...) chopping veg, but not realised until I see blood in the bowl.

When I’ve seen a neurologist in the past (UK) I’ve been stabbed with the little pin with nothing flagged, but I think they mainly stab you on the feet? The little pin and big tuning fork make me laugh in cerebellar exams. Way more fun than your run-of-the-mill medical appt 🤪

[wobblybee]

Hi Mary 🙂 If your Neurologist isn’t already aware that you’ve given yourself injuries, it’s probably time to clear the air. I don’t know what can be done about it, but clearly it’s becoming a problem. At the moment reviews and appointments are likely to be done by phone or Skype, and it could be a while till your next one. You could ring your Neurologists Secretary and explain why you need advice, it might be possible to have a call back.

[MaryRH in reply to wobblybee]

Thank you wobblybee. Good tip about ringing the neurologists secretary, I assumed I’d have to go through my GP x

[DeniseLB]

You are not alone with the lack of sensation in the hands it was the start of me getting any sort of diagnosis, my first was peripheral neuropathy, only changed to Ataxia after sticking electrodes in my legs, either or they are very similar.

It probably wont help, but feeling like I was losing my hands actually scared me more than losing my legs, that was five years ago and it is normal and if you keep working your hands you can keep them going, or so far for me….

You have to be more careful and happier to do an off this site chat, I don’t want to scare anyone. I have just found out over the last few years that not everyone shares my difficulty and it is and has always been quite personal to me.

If anyone feels I have overstated this then feel fee to comment.

[MaryRH in reply to DeniseLB]

Actually that does help, and so thank you. It scares me more too, because I seem to have so little control. I practise squats and stretches daily to keep my legs going and walking into things bothers me less than having to restrict what I do with my hands. Because you’re right about being careful. I haven’t even attempted making jam this year (burns), I don’t do any fine chopping by hand any more and I get help to grate cheese. Cooking is therapy for me, as was playing the piano (still play, just not very well as my fingers fall off the keys!). I don’t say that to make anyone feel sorry for me, just to say I get you. I feel very lucky reading other’s experiences on this forum.

[DeniseLB in reply to MaryRH]

Okay fair enough, but you do have to work a lot to keep your hands working, B who also responded got me to make a cake if she remembers? I do not do that everyday!

But, I started with trying to write my own name and went on from there, I learnt to touch type at school and that was actually quite easy to keep. Oh if is said it takes 20 mins to prep for something to cook then add another hour on! Everyone can now read my hand writing and god forbid, I bought sharper knives!!! You just have to think differently and be careful! I have got myself into trouble a few times, but I am still here....

I am currently trying to get myself to draw again as my hobbies were, art, pottery and sewing! A bit shit really. But, I don't give up very easily and you have no need to be scared, just think of it as just another thing that you have to deal with and get on with it!

xx

[DeniseLB in reply to MaryRH]

I have been thinking about this a bit more and you have to stick with the piano as that is like a key board is to me, stick something on the keys so your fingers don't slip oh, and use stress balls or anything. You can make jam in a slow cooker, I know I have done it. But, you have to make it clear to the people around you as they won't get it, I once told my best friend that someone stole my hands and I am now like a puppet master that has to try and control the ones I now have. Anyway I hope some of this helps and we just have to keep on going................................... xx

[MaryRH in reply to DeniseLB]

Thanks for the tips, I appreciate it. I thought about you too, I ordered one of these yesterday. Really looking forward to trying it! mobilitysmart.co.uk/prepara...

[DeniseLB in reply to MaryRH]

Ok you really are going to hate me now, but you have to just keep using your hands, gadgets do help a bit, but what you will find if you can't actually use your hands you will not be able to use the gadgets!

[coat2003]

I totally get you.worked at equivalent to Sainsburys meat cutting on request, handled a lot of chilled stuff to a point of losing sensation in the fingers, won't describe any further had a finger accident, in case eating. enough needed stiches in my finger CANNOT GO AND STEAL ANYTHING a very unique finger,thumb print...scar left...no probs now. You are right what you describe, seems to mea neuropathy damage diabetes in feet, loss of sensation...even if arms/hands affected NEED a diagnosis. it can be nothing or sthg and in future can AVOID more damage, esp. at work. I am fully fledged ataxian, using walker...speech affected, defo walking, you see straight away.partial loss of sensation mainly arms before episodes of ataxia. ALL MANAGABLE.wOBBLYBEE IS COMPLETELY RIGHT, SOMETIMES EXPLANATION HELPS MORE THAN mri scan. have a chat.

[coat2003]

perhaps to your gp, to send you to a specialist, but NOT FULLY DIAGNOSED, sometimes it takes longer.you cannot lose only GAIN. byn referral.