Hi, I saw a different specialist on Weds who suggested trying botox injections into muscles in my arms and legs to relieve contractions and spasms. Has anyone had this or heard about it?
I live in France so things may be different here - I don't know.
I once asked a physio about this..she said I'd need so much of it for it to work that it would be toxic (botox is a poison capable of paralysing), so you'd need to be very careful.
I found relief from using a passive trainer bike (motorised and pedals legs faster than I'd be able to myself) it activates a different area of the brain that controls 'involuntary movement' such as tremor, and muscle spasms, dyskinetic movements.
I try and go on my pedals everyday even if don't have time for wii fit etc. The yoga/pilates helps with muscle stiffness and joint mobility but doesn't do anything for the involuntary movements, whereas I've had a significant improvement in them with the Forced Exercise theory.
I can hold normal cutlery where before I was using weighted cutlery at home and splints on arms/hands to help me keep hold of cutlery when when eating out. (sliding end of knife/fork down the splint) and wearing splints to keep arms steady to self propel in a fluid motion and stop fingers constantly flexing. Recently I went down town with relative I pushed myself most of way (she only helped on hills).
If I don't go on pedals for a while I notice a difference.
thanks, but I've not heard of the Forced Exercise Theory or a passive trainer bike. Can you explain and enlighten me further please. Would be very grateful. Sounds like you're having more difficulties than me. Do you have SCA too? I feel everything is advancing very quickly at the moment.
Hi,
My brother has had two rounds of Botox injections into his eyelid as it was drooping.
It was intended the Botox would lift his eyelid.
Each injection lasted around three months and has to be repeated.
my daughter had them in her legs 7 years ago they wored on her.
sorry about spelling i mean they did work for her
I've heard of botox injections and that they can work, although I've never had them myself. I agree with Katilea, as I find exercise, yoga and the like, really helps my tightness/spasms. I do stretches each day also. I also walk (very slowly) on a treadmill because I can hold on (my balance is REALLY compromised)! I'm glad they helped your daughter Elaineevans! Best wishes whatever you decide! ;o)
Having spoken to my Neurophysio she recommends a motomed for exercise and my husband thinks rowing machine What do you think as I have difficulty getting out of the house now with the rollator.I can walk a little as it is my balance that has gone. I used to do a lot of walking and gardening.I have CA.I am getting fatter and need to do something.
I used to go on a rowing machine at the gym but now I would even have difficulty getting on it.I would get stuck.Even two years ago I would have to be rescued as I got my feet stuck!!
Don't get mucsle spasms yet.Dr has not mentioned Botox to me.
Think it works for some and not others.
In answer to silkwood... if the rowing machine works by you using your own muscle strength to move back and forth that is voluntary exercise.. and won't have the same effect as a bike or motorised pedals that pedal for you (effectively forcing you to pedal faster than you would be able to)
If getting on and off things are a struggle... a set of pedals rather than a full bike would work as you can do it from sitting in any chair.. I use wheelchair or sofa.
To answer original OP Here is the details of Forced Exercise study:
medscape.com/viewarticle/75...
and
www2.rsna.org/timssnet/Medi...
These studies were done with Parkinsons patients who had Dystonia as part of their symptoms. I have involuntary muscle movements in arms rather than a constant shake and it has worked for me. I can't guarantee it will work for everyone.
The passive trainer pedals I have are here:
mobilitysmart.cc/therapy-or...
the advantage with the pedals is can use on both arms and legs by putting them on a table top to do arms or on floor in front of a chair to do legs.
thank you so much for that info. I shall see what my physio-therapist thinks tomorrow morning too. I have involuntary muscle movements (spasms) which can be quite big movements in my arms and often a constant shake too. All seems to depend on how much I have done and how tired i am.
Hi WibblyWobbly, I had Botox injections a few years ago. I had them in back of neck & shoulders, it's every 3 months because they grow back. I now am in Spain so don't have them. I see a Chiropracter if I need to. When I had Botox it did relax the muscles but I feel fine without, you could try & see how you get on.
Keep well
Berejena
I need to decide whether to have Botox injected into my eye muscle. My appointment
is early May, in the meantime I'm trying an Acclusal Contact Lens. Apparently Botox
will relax the muscle and reduce the double vision for periods of 3mths at a time.
I tried Pilates as gentle exercise but since most of my balance problems are set off
by neck movement, it didn't turn out to be a very good idea.
It has occured to me that some symptoms are worse depending on diet, an excess
of sugar and gluten, although I've never been tested for Gluten Ataxia I have had
problems in the past with Candida.
I have changed my diet recently - haven't noticed any difference with my symtoms. But i have lost a little weight 
I eat very little sugar - except natural sugars in fruit, and have reduced dramatically all my carbs including bread and pasta etc. I made these changes because my cholestral levels weren't good. I think that really is due to in-activity
Hi wobbly bee I've always wanted to try Pilates, I have neck probs. too & my balance has seemed worse the last few years. Guess it's a NO. I felt so healthy after a gluten-free diet but I don't now, I don't eat a lot of bread & pasta anyway, it bloats me. Being in Andalucia, Spain I hav'nt seen much gluten=free foods around. My cholesterol was high now there's no problem. I think it's the Mediterraen diet
I've tried various gluten free breads but so far have failed to be enticed to convert to
any of them. Rye bread doesn't do anything for me taste wise but a certain brand of
soya and linseed is tolerable. Vogel Soya and Linseed is quite dense in texture, and
I find it much preferable to Burgen Soya and Linseed, which is light in texture and more
like ordinary bread.
I carry more weight than I would like and should make more effort to exercise and be
stricter with portion control! But, I think that after the menopause, weight control is not as easy, on top of the periods of enforced inactivity we all have to contend with (in case Jurgen is reading this, I wasn't including men in the menopause).
Recently, I had afternoon tea (at an extortionate price) , it included gluten free scones.
They were awful, I was very disappointed. Just as well really, because I would have
gone on to over indulge in clotted cream and I don't think it was low fat!
Best wishes
Beryl
thanks Beryl, I am not gulten intolerant (I've been tested) and my illness is def not auto-immune. So really was trying to combat my bad cholosteral levels. I am sure is due to my diet and that my activity levels are very low. Hopefully when I have cholosteral checked in a few months will be good. Trying hard not to re-lapse when the weather is cold. Was dreaming of victoria sponge cake the other night.!!! Just trying less carbs and smaller potions, but upping fish, nuts, dried fruit, porridge
I have Dystonia (involuntary muscle contractions around my neck). I have Botox injections in the back of the neck every 3 months(Addenbrookes Hospital) for about 5 years. It can be a bit hit or miss & it takes a week or so for any noticable benefit
Friend in our support group has Botox injuections in legs for spasms - says they work fine - but have to be repeated every 4 months or so...
All this info sounds very promising. I'm leaning more towards 'having a go'!
Hi Wobblybee
I used to have Botox injections every 3 months in my neck. It did help me at the time. Do 'have a go' & see how you feel.
Kind regards
Berejena
Hello, I'm french, 33 yr old, and ready to get an injection in my "mollets".
Just wanted to hear some news about your experience.
I haven't gone for the botox route yet. If i do will let you know.
Has anyone tried Arginine. Saw this article and was thinking about trying it. Any suggestion.
Is anyone else excited about the breakthrough or have I got it wrong?re-habillitation centre
Hand is getting thinner and numb
does anyone feel more confident about switching to pip now they have seen the channel 4 documentary
