Does anyone else on here have Ataxia with Dystonia?
Is it a type of Ataxia that comes with Dystonia as part of the type or syndrome?.. or is it just a fluke to get both together?.. or quite common even though they are separate conditions.. for example.. people with CP often also have hearing problems although they are separate conditions so you can have one without the other.. if you get what mean?
My muscle tone varies wildly, sometimes (with balance belt and splints on to steady me) I've managed to walk a few steps, other days I struggle to stay sat up in chair unless I use a chest strap.
I've taken to crawling to the bathroom at night as its easier to drop to floor and slide across vinyl floors into toilet than to get myself to standing.. keep my balance, turn my self around and sit on rollator so can push myself backwards into ensuite bathroom... I can be in the bathroom and back to bed if I slide along the floor, in the time its taken me to steady myself enough to stand and transfer... and sometimes my legs and feet are so floppy I can't actually stand unless I put on socks, splints and boots which don't look great with PJ's and takes far too co-ordination at like 2am when you're desperate for a wee.. lol!
I can't write with right hand it locks up after a few strokes, managed to teach myself to sign my name with left hand, I can still steer chair better with right as its not as jerky as left and most of time with chair you only need to keep it in a straight line to go down the road.. for computer joystick I do better with left hand as need it to react quicker and change direction more often... sometimes I do better holding something in left hand grip as tighter for some reason and putting weight of right arm on it to steady it.. I'm re-learning to draw like this and hoping to do a nice watercolour this year of a goose in the reeds that I took photo of at nature park (when I get my art desk sorted!)
Also the most unusual feature for me which has confused many a doctor is I never developed a constant tremor, though I get intention tremor trying to do fiddly stuff, zips, buttons, etc.. and the involuntary muscle movement that happens at rest temporarily stops when I am concentrating on using arms like on wii boxing, tennis or typing as soon as I stop or slow down my arms go jerky again.
Are these issues unique to the combination of Ataxia with dystonia?
I may have mentioned before that I too have dystonia in my right hand, for which I received Botox injections on the NHS. Ive stopped these as I found my own very cackhanded way of writing but no more than a few words which can be all over the paper. I understand from my Neurologist that the two conditions are connected. There is a Dystonia Society, based in London.
Its interesting that there is a connection between them.
I asked about botox before when they first started, but was told I'd need too much to control all down both arms, hands and both legs and it worked better with a single site ie writers cramp or just in neck or voicebox.
I have also posted this question on the Dystonia society forum to see if anyone there has a combination of both.
I thought it was bad enough just having ataxia.Haven't got dystonia yet but i wobble around for ages in the bathroom.My limbs certainly get the wobbles in the evening. You are wonderful keeping on fighting and adapting like you do Kati.
Thanks, I hope you don't get both, I don't think its a given that if you get one you will get the other also.
I haven't had any replies on Dystonia forum so assuming most of them have primary dystonia where limbs gets stuck in a fixed position like cervical dystonia etc.
I think it helps that mine stop temporarily when I do things like wii fit so can get a break from an hour or so exercise which tends to tire muscles out and they behave better for the rest of the day.
I don't always have the energy to do a 1-2 hour workout first thing everyday though before taking Inca out and doing whatever else I need to do that day! .. sometimes if they are really jittery and making jobs difficult I'll stop and have quick game of tennis or boxing to see if they will settle down it sounds a really unusual solution but this symptom seems unique to Dystonia from the research I have done and videos of other people I have seen so far.
watched the thing by Michael jl Fox.It was just like watching my dad again.He had Parkinsons and moved in exactly the same way.I wondered if there was any connection but the specialists say there is no sign of PD in me.His whole limbs used to move when the drugs were not working very well.His speech was not affected but he used to lock up and couln't moveSounds familiar to me as I stiffenup in the evenings but i don't feel tired at all.Dad got PD at 50 and they put Parkinsonia on his certificate. I wish I had known more in my 20's but did not think.I am trying to exercise but it requres a lot of self discpline.
Surprised you dont feel tired Marie - you must have strong constitution.
I thought the one thing all of us with ataxia had in common was fatigue especially in the afternoon.
I do find that Co q10 has helped me a lot - I still feel tired but dont actually fall asleep as soon as I sit down and put my feet up.
I couldn’t get that one to play one mine. I’ve seen the one where he ice skates and he can skate better than he can walk, his movements also reduce when he skates and as soon he slows down and they stop to chat, you can see them starting up again.
I once saw a program about a lady called Janet who had severe dystonia and the muscle spasms never stopped at rest she even struggled to keep her eyes open cos muscles around eyes were affected, but when she played the flute, hoovered or rode her bike they stopped! …it must be unique to Dystonia, I don’t know of any other condition where this happens as usually an ataxia tremor is there the whole time. …like me she struggled to sit up for any length of time and had to lie down most of the time, unless she was doing an activity where they stopped giving her temporary relief, but when she stopped they often came back worse than they had been before she started playing flute or whatever! …it’s a weird one to explain!
I was just diagnosed with Cervical Dystonia today...yes, separate from Ataxia. I think. I'm getting another brain MRI to see what else may be happening.
My neck has been hurting for the last two years, so this is good news. Now I can get proper treatments.
The head tremors having been taking over my life.
Sorry you have this condition. I have ataxia and when I turned 65 years old I had painful nocturnal cramps in my leg muscles. I solved this problem with calcium 1000 mg magnesium 500 mg vitamin D3 1/2 dosage morning and night. My friend had a stroke and had severe nocturnal cramps he ask me what I was taking for cramps I told him he tried it the cramps were better but he still had
some cramping so I told him to try additional vitamin B1 100 mg 3 times a day and vitamin B5 Pantothenic acid 200 mg he called back and said he has no more cramps.
I have cerebellar ataxia, dystonia and many other symptoms like sore eyes, restless leg syndrom, spasticity in legs, twitches and probably psuedobulbar affect. I think the dystonia comes on as a result of CA and that CA is the most pronounced symptom in a CA diagnoses. There’s other symptoms that can come along with CA like in SCA17 dementia can occur, SCA3 restless leg syndrome can manifest and in other SCA’s dystonia can be an additional symptom. The dystonia seems to affect my neck the most.
What are you doing that helps with the neck (cervical) dystonia?
Have you tried botox injections?
I have not received any treatment for any of my symptoms. I have herd about Botox injections. My doctors so far have told me that I’m not going to receive any treatments. I want to apply for medicinal marihuana.
I live in Colorado, so that's any easy thing to get here.
It's not a route I'm interested in, but I do understand others wanting to give it a try. Whatever works.
I was initially diagnosed with dystonia. After 10 years, docs did a CT scan, and cerebellar atrophy was found. I then had a blood test sent to Athena Diagnostics, and SCA 8 was found. There has not been a link btw these condition, but I was told dystonia is common in other SCA's.
I have dystonia and they researched my dna, they found a mutiation that has never been found before. But other mutations in that same gen, named PDYN have only been connected with the illness ataxie They told me that they never found a conection between dystonia and ataxie and therefore they stop there investigation. So I looked on google. The first hit I found was this site, where people has bouth illnesses. So maybe there are more people with the same DNA mutation as me and there is a connection between those two illnesses. I also see some similarities between ataxia and dystonie in symptoms.
This is what the hospital wrote about my dna:
c610T>C; p.(Tyr204His) (NM_024411.4); g.1961124(HG19) in PDYN gen
Did you try Marijuana? If so, did it help?
I first started having cramps in my right hand when writing. My first neurologist diagnosed it as Dystonia or “writer’s Cramp”. I received Botox injections in my right arm for almost a year without any success. 2 years after that I was diagnosed to have SCA-6 through genetic testing. People with SCA have also muscle spasms which can become very painful. I cannot even sign my name. I take Tizanidine, which is a muscle relaxer. But sleepiness is a side effect. So I take it mostly at night. But it does not serve the purpose for daytime since I avoid taking it then. I did not know about the genetic connection of ataxia and dystonia. I have to do some reading on that. Thanks for posting.
How difficult was it to teach your left hand to sign your name so the bank will accept?
Just a thought My Uncle was finding it increasingly difficult to write his name in a legible fashion. So his Bank asked him for a sample of his signature, and then issued a ‘stamp’ for future use xB