ataxia hovers and i feel horrible

[sam99a]

hello, i've been looking to see if someone else experiences this. i have ataxia and i walk horribly most of the time. every once in a while (no more than once a year), i notice my walking improving over about a week. for a few days, i can almost walk normally. then as ataxia 'hovers,' where i notice myself stumbling more again, i feel malaise, but it's horrendous.

i have to stay in bed, i'm weak, and when i sit up, stand, or walk, i have to be careful not to fall. my body feels like something is really wrong with it, but i can still walk okay. this horrible sick feeling lasts until ataxic gait returns to my (now) normal walk and then, even though i walk horribly, i feel fine.

any thoughts? if this happens to anyone, is there anything i can do to feel better during the better walking and feeling half dead time?

thanks

[wobblybee]

🙂 Just wondering, are you diagnosed with an Episodic type of ataxia? Certain types are prescribed Acetazolimide to help with symptoms 🙂 I can relate to the feelings you have during your ‘down time’. My own symptoms started off fairly similar, being ok and then a ‘downswing’ and back to ok etc etc.. I’m still not diagnosed with a specific type, but Episodic has been considered. Make an effort not to overtire yourself, fatigue can definitely worsen symptoms, it will eventually pass but learn to recognise triggers. Multitasking can be stressful, although we don’t always recognise it, pace yourself. During the times when you do feel ‘normal’ it’s likely you’d want to take advantage and carry on as before, do that, but don’t overtire yourself 🙂xB

[sam99a]

I don’t know which kind other than it’s not genetic. You know I might be overdoing it during the time I can move better & that’s why I feel half dead. When i’m walking horribly, I have to take it easy. Hmmm thanks, i’ll be sure to watch that. I’m not taking anything for ataxia. I have a new neuro & he’s more concerned w/ medicating dystonia at the moment, but i’ll ask him about the medication. Thanks!

[Marz]

An wondering if you have ruled out B12 deficiency - which can become a neurological issue with a result below 500. Good levels may help the Ataxia. I always know when I need my next injection ... 😊

[PeteW]

A dr told me the fatigue associated with the ataxia’s is because your body is working very hard just to function. It’s a bit like a regular person going to the gym for a good workout....and never finishing.

[DeniseLB]

I am not sure I can help and am coming in late on this, but before I was diagnosed with anything I spent a whole three months in bed, I lost all my muscle tone and looked a bit like a rag doll, I had everything that you have described. I still do and take to my bed at its worse, but on the good days I walk, exercise every part that is possible and if you have not had physio it can help. Apart from the fact that part of my brain that deals with balance has shrunk and I have constant low vitamin B I have no idea why this happened to me, On the good days set yourself a challenge and try and stick by it, eat as well as you can and work out anything that you think of and do anything that might make you happy no matter how small,

I think depression gets to us all and sometimes I feel that is the real killer, so within whatever your doctor has told you, you do as much as you can and push forward.

Sorry if I sound a bit like a lame duck as I am the worst at hiding during my bad times,

Denise xx

[sam99a]

thanks so much for the replies! i have had my vit B level checked; it was the first thing the new neuro did, and it was normal. though saying that, i don't know what the number was, so i'll have to ask.

i get that about the never-ending intense workout. walking in itself can be exhausting, which is why the horrible malaise when i can walk is so frustrating. perhaps my body is just going through its own struggle and it takes it out of me.

denise, i struggle with getting down from time to time. it sucks to be young, to have siblings and friends able to travel, have careers, reproduce, or just go out whenever they feel like it when i spend most of my days in bed. recently i started exercising again. the first day was in itself depressing, as i realised how weak my legs are by the shaking after about ten minutes. but a few weeks later, i can do a bit more. it feels good to accomplish even the littlest thing. hang in there.

have a good weekend everyone and thanks again!