MSA getting worse

[vlinder23]

I am 65 and have MSA for 4 years now.But it is getting worse.I can hardly walk.I feel desperate.What to do?

[tedjohnson]

Hi. Vlinder 23

I am very sorry to hear you are feeling desperate and I would suggest you see your GP who can put you in touch with a specialist

Unfortunately we Ataxians are in a group of mysteries in the neurological department and many of our problems have no answers. Have you used any aids to help you e.g crutches, walkers, scooters etc. I am in a very similar position as you with an added problem with my head and eyes.

I wish I could be more helpfull but try and keep happy and once the warmer weather comes we may all feel better

Best wishes. Ted

P.S. Keep writing in this site. It may help

[wibblywobbly]

hi, sorry to hear things are progressing so quickly.

Do you exercise regularly?

I don't have msa as far as I know, but exercise seems to be the only helpful thing for slowing down progression for us ataxians.

Hopefully someone else can offer you some more advice

This cold weather doesn't help. Hopefully spring will be here soon

xx

[vlinder23 in reply to wibblywobbly]

Yes I do .Thank you for your reaction.I feel not so alone anymore.Thanks for that.

[suzie44na]

Hi Vlinder23, Sorry to hear of your troubles. I have cut down on tea and coffee and I am now drinking Bora Bora, gingerbread house,chai of Madagaskar, mornings dawn and rooibos. These drinks have a lot of health benefits, so I thought I would try these and I find they help with my twitching a little. Maybe you can ask your GP about them. Sometimes I find I also need a little bit of salt if I am feeling too dizzy, so I add some to my meals if I need to, this helps at times. I bought a peddle machine to use while sitting down to help my legs stay stronger as I do not walk much either. Try to keep your hobbies up to and do things you enjoy, i find this helps me not to think about my illness as much, I do jigsaws, painting sometimes,plays games or do crosswords and I look at the moon through my telescope which is fun. I go out in my electric wheelchair so I can some fresh air, don’t know about you, but staying in a lot does make me feel worse. I wish the warmer weather was here, I might take some nice nature photos then that should be nice to do. I do not take many tablets none seem to help much, apart from the odd diazepam it help my muscle spasms , but I rarely take it because it is addictive. Don’t know if any of these things might help you too and maybe ask your doctors if there is anything you can try that may help.

Wishing you all the best,

Suzie

[Pec2884]

Hi Vlinders23. I have MSA. Dx 3 years ago. I am also loosing control of my legs and am unstable. No other symptoms have developed as yet. I feel for you. I do make an effort to swim and cycle which hopefully increases my muscle memory. I it is a lonely disease as when I sit down no one even suspects I have MSA. Keep writing to us all and keep smiling. Liz