Muscle spasms

[bakethat]

Hi I am Mum to 2 sons aged 28 and 24 they both have Friedreich's Ataxia. My eldest son is having trouble with muscle spasms, it started in his legs about 3 years ago and he couldn't stop his leg from lifting up or coming off the wheelchair footplate. He was prescribed 20mg Baclofen a day and this really helped. However over the last year he is having trouble sitting back in a chair as his legs and bottom muscles seem to spasm and consequently push him forward in the chair until he is almost laying, he has to be strapped down in order to stop this and even then you can see his muscles and legs fighting to go forward. This is so dangerous as there are times when he cannot be held down when dressing for example and he gets so worn out trying to heave himself back in the chair. In September the Baclofen was increased to 40 mg a day and has not helped in fact it could be getting worse!

Has anyone experienced anything like this, thank you

[FFNick]

Exercise the muscles is what worked for me. Instant relief. Its like the brain is checking legs are still there.

The Baclofen at 20mg will reduce intensity of hurt during spasm but will not stop spasm. So increasing dosage may not work. BTW I am not a GP. Very few people will know what you are talking about.

Just weight bear on the legs. ie stand up (with work surface for support), on bed do leg raising. I learnt this by experience. As on Baclofen with leg jerks and spasms.

Physio terrorists are people who know. Keep looking till one who understands, is found.

Higher dosage of Baclofen might increase side effects. Dizziness, loss of balance being two that physios are interested in.

Taking advise to work out what works for you is definitely way forward.

[bakethat in reply to FFNick]

Thank you for replying, we will go back to the doctor about this. Unfortunately my son is not able to weight bear at all now and cannot control his legs to excersize very much either, I will try to speak to a physio too.

[wobblybee]

Hi🙂 You may reach more people via a Friedreichs support group🤔 On Facebook, try 'Friedreichs Ataxia Parents Family and Friends Group - 'Parents of children with Friedreichs Ataxia' and ' Friedreichs Ataxia Support Group'. It's really worth exploring all options 🙂xB

[bakethat in reply to wobblybee]

Thank you I will definitely increase my search, much appreciated.