what is happening to my hands? does everyone else have this symptom?

what is the explanation of muscle weakness in both hands from wrists to tips. At moment, even typing this is hard work and "hurts like hell". In my case, keep dropping things, or not holding onto things; and sometimes, when i do manage to grip something, my fingers then won't let go and cups, spoons etc., go for a slide across the work surface or crash to the floor. Right now, trying to type, my fingers do not respond to what i want them to do, it is almost like slow motion, but also fingers are numb, tingling and very stiff and painful. Is this typical of this ilness? AND WHY IS IT, THAT SPECIALISTS KEEP SAYING "THERE'S NOTHING WRONG WITH YOUR HANDS..... I would like them to try mine for a day and see how it feels...... sorry i am ranting, but they hurt and won't do what they're told.

30 Replies

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  • snap!! i've been told muscle weakness, nerve damage, neuropathy - so take your pick hon. mine have been like this for 5 years now and just been told to put up with it xxx

  • thanks for your reply..... eight years me, and have been told the same.

  • ive not got much pain in my hands but my fingers are bent inwards and are difficult to straighten making it difficult to grip or hold things Is this a common problem?

  • it is a relief to hear other people sharing the same or similar problems....and i must say, sometimes i can see the funny side and laugh at myself. Like today, went to put my handbag strap on my shoulder properly, and my fingers weren't strong enough to do it, but something happened eventually and i boxed myself in the chin. boxed myself quite hard actualy, considering the hands were weak again

  • it must affect different people in different ways I have not noticed weakness or excessive tremor in my hands, intention tremor in my legs yes but not my hands just no sensation of how hard I am griping things.

    so here is a tip it may be of use to people with grip problems, when holding a glass with no handle get into the habit of curling your little finger round under the glass it then supports the glass underneath and also when using paper/plastic disposable cups [mackdonalds ect] use two cups one inside the other [discrete] I know this may not be the right place to say this but if it helps anyone it is.

  • nice to hear from you and thank you for the tips, although i am terribly stubborn and trying to carry on as normal, so as a result, lots of accidents that can frustrate me but also make me laugh at myself. nothing iike a chortle to cheer youself up.

  • My hands are weaker but no pain yet.I can't hold tablets as they slip out of my fingers and I squash my seedlings.The OT told me to get a basket for saucepans as I can't carry and balance heavy water.It goes everywhere.I use both hands to hold a cup now.

  • thank you for you time in replying. Did your gp recommend seeing an OT and does it help as i have not been offered anything, other than "there's nothing we can do to help you".

  • Hi Joybells

    I am sorry not to have replied before now. I hope things are not too bad for you at the moment.

    Unfortunately, as I am sure you have gathered from this site, it is all too common for doctors to say to their patients who have recently been diagnosed with ataxia 'there's nothing more we can do to help you.' Have you got a further appointment with your neurologist and have you ever had any physiotherapy or occupational therapy?

    Harriet

  • Hi Harriet,

    Sorry, i have not replied to you..Have had a really bad month and spent most of it either in bed or lay flat, resting head and body flat on lounge suite.I may well have slept the month away!

    My Neuro never gave my condition a name, he simply said that i had a form of migraine that caused me to have partial seizures and something about my nerves not sending the signals properly to parts of my body causing unsteadiness and hand weakness. He then said it might go off in the future.

    Only when attending my GP apt and again staggering in, in front of her, a couple of months ago, did she say, "Oh you have your vertigo again". But, as I said to her, all the tests years ago, said there was nothing wrong vestibular and it was not vertigo.

    At the time of seeing her, in a right state because of a benefit decision and not knowing how i was going to manage or get back into work.... she offered me a note to cover me for three months and did not know what name to give my condition.I told her to refer to the neuro report and she then confirmed for the very first time in eight years of struggling, that i had episodic ataxia. Fortunately, she fully supports my appeal against ib decision, but i am petrified of the tribunal. I have no reports from physios or ots's, absolutely nothing except her note. My doctor said she knew what was wrong with me but that there was nothing they could do, so i've just got on with it and made the best of the good days.

    Sorry for going on and on, but i am really worried about working with this condition, although would be willing to try it again ; but even more worried about a Tribunal without any evidence or reports to back me up.

    a very worried,frustrated, joybells

    PS I forgot, seven years ago i tried physio. Apparently to re-train my brain regarding balance. I had walk very fas around my whole house and then abruptly stop...... i could not carry on with this as i kept falling over or smashing into pure brick walls! not good for me.

  • "nana23" writes::

    just been told to put up with it

    ******************************************

    that´s it, that´s this bl....disease.

    Just make the best of it, look at things like "MontyPython"

    Kind regards

  • thanks, i do agree, we all have to look on the bright side.

  • Hello Joybells

    I haven't got pain ot muscle weakness in the hands but I do get tremours and my coordniation is terrrible,I have problems typing and it makes me mad,.When I tink what I used to do111 I try and concentrate on what I can do now. and there is a lot.

    Take care

    Regards

    Fifa

  • Hi,

    snap, regarding the co-ordination as well. I used to be a legal secretary, typing. at much speed all day, so i know what you mean, Lucky now, if i can manage to pick the lap top up, without dropping it,, never mind typing easily., but at least you can type whilst resting, especially the head and neck area, which i find helps the dizziness..

  • Well , dear "joybells",

    pointing to "MontyPython" may sound a little rude.

    But, looking on the bright side is all one can

    do if you suffer from SCA - as I do with no remedy

    in the foreseeable future and thinking that your children

    and grandchildren and... will have to face that fate:----->

    en.wikipedia.org/wiki/Ataxia

    Regards

    Jurgen

  • i'm fed up with being told"just get on with it" but being an independant person I just do my best to carry on.It doesn't help though!

  • I just do my best to carry on.It doesn't help though!

    *************

    Hi "indi",

    don´t be depressed - it´s easy to give that advice, I know

    As I said: "MontyPython" has an answer

    Yours

    Jurgen

  • I have tremors in my arms and legs but no-one has ever told me why. I was told I have Cerebellar Ataxia but that was it. I do find that as I type I make mistakes that I wouldn't normally do (such as grammar). I belong to Ataxia UK Dorset support group so I can at least ask my friends.

  • Hi "joybells",,

    you should have tagged your question.

    Love

  • Constantly hitting the wrong key can be maddening!! Fumbling while trying to pack

    shopping can be maddening!! Missing your mouth with food can be hilarious, as

    long as it's not in public. Sometimes, my hands seem to have a life of their own!

  • Over the last three months my condition is getting worse My GP has now reffered me to the local rehab. unit I hope i will now get some advice on physio etc. I aiso now need speech therapy as I am constantly asked to repeat things although I can manage if I think carefully and breath before I speak Ihope I will feel as if more notice is being takenafter this appt.The frustrstion is the worst part of the condtion You get a feeling that you have been side tracked especially with regards to my age[73]

  • Hi laddie

    I am sorry to hear that things have got worse for you and hope that you find input from the rehab team helpful.

    The following link is for the Ataxia UK publication on speech and swallowing. It sounds like the speech bit would be more relevant to you. I thought it may be interesting and helpful to you while you wait to see a speech therapist.

    ataxia.org.uk/data/files/in...

    Harriet

  • thankyou Harry B Im sorry I was having a bad day yesterday.Im sure folk are in a much worse situation Ihave found this site a big help.To talk to other people with this complaint has been more informative than the responces I have received from the proffesionals I have seen.I thought I was over the depression

    that comes with the physical problems but it surfaces now and then.I have not

    any helpful tips as yet but thanks to everone who has been so helpful to me

  • Anytime laddie. Bad days happen to us all and we all a need a little bit of help to get over them. I am delighted you find this site helpful. Long may it continue!

  • I am also suffering similar symptoms, my fingers feel numb and tingling with stabbing pain in my hands. I use my hands with difficulty performing every day simple jobs. I also get pain in my wrists. I feel quite useless and embarrassed when I keep having accidents.

  • Happy Easter everyone keep smiling every day is a new day xxx

  • Yes, Happy Easter everyone:-)

    The sun is shining here and the air is filled with birdsong:-) xBeryl

  • It`s so quiet here, I forget that it`s Easter - Happy Easter to all :-)

    Did you get your eggs? or Easters Bunny? ;-)

    I like the Monty Python touch - reminds me of me. Never give in to the thing, even though I do get days when I`m really low - that didn't come out the way I wanted it to, but I think you`ll get my drift.

  • Hi Joybells

    I to have ataxia,the symptoms in your hands are the same as mine,at the time (20 years ago) the neurologist said "if you have a tingling sensation in your hands you may recover".Fortunately he was right,I can even play the piano now (only slowly and with tunes without to many notes in them.

    Best Wishes

  • Took me ten years to get diagnoses for what I have and an educated neurologist. Go to a reputable neurologist and don't stop looking until they really listen and figure out what is wrong. In my case the diagnosis was Hashemi to Encephalopathy. It makes muscles weAK and causes many neurological issues, emotional issues and physical issues. My hands are weak where sometimes washing my hair or anything involving gripping feels like muscle burn after a hard workout at the gym. Don't give up. Good luck.

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