Having been diagnosed with progressive cerebellar ataxia 6 months ago last night I awoke 5.30a.m. with my left leg shaking so violently i couldn't move for about 5 minutes,just lay flat on my back with heart racing and broke into a sweat. My left leg
is weakest and causes most trouble but this really scared me. anyone else experienced this
Yes, I get it in both legs. Baclofen helps and I eat bananas also.
thank you for your reply,my g.p. prescribed baclofen but my neurologist took me off it saying it wouldn't help anything, will
try the bananas
I have Baclofen prescribed by my neurologist, it relaxes the muscles and it helps me to focus x
Thankyou for your reply will see my neurologist in july see if he has further thoughts, strange how many people seem to have been prescribed this and he took me off it
Hi Petbar I was prescribed it for my eyes as I couldn't focus properly, everything was shaking. They do help me, although I have progressive Ataxia. I truly hope your neurologist puts you back on Baclofen.
thank you for your concern,it's very confusing ,many people are on this treatment and find it
beneficial,will pursue it with my neurologist
I also use Baclofen, it reduces the pain, does not stop the cramp. You might be experiencing withdrawal symptoms. Strangely, it was my specialist who suggested Baclofen not my GP.
Occasionally forget to take Baclofen every 8 hours and it hurts when cramps occur.
Bizarrely exercise reduces the spasm frequency. I force myself to stand up and walk around. If you can, get back on Baclofen for 3 weeks at least and see what happens. Might reduce painfulness.
I am not a medical professional.
My neurologist took me off the baclofen it was he thought making things worse (He doesn't think it has Or was now but my muscles are not (hopefully going into those agony spasms ever again.)Ever since I came round in ICU I had no feeling at that point in hands or feet all came back except two.I am getting numbness and not painful pins and needles in other hand and left foot but a lot of shaking and pressing on fingers esp tips brings them round it's not worse and any spasms I will be right back to the Baclofen(I had the liquid until I could swallow don't know and don't want to know how long it went on for all a big blur but a living nightmare for my parents and son who asked my Dad was I was totally rigid as a pipe and couldn't talk to him..He got his mountain bike as my Dad said you got to get yourself out and help him pick it!!Life goes in ups and downs I just really don't want to know if it's inherited so please don't anyone tell me if there is a 1% chance of my son getting this...Sometimes oblivion is better!!😊❤️5 minutes at a time.If That's to much 5 seconds (Your diagnosis does not define you)You are still a Mother /Father friend sibling or child of someone that's more Important...
thank you for your reply,fortunately have not had another episode, so fingers crossed, hope your are o.k.
I hope never again a repeat of the toxicity last time was enough to half kill me chucking up blood(My Mum's birthday news for her 70th not what I had planned for her this year is in hand and approaching fast so everyone 🤞I make it a special birthday for her )Her present is a secret to her it's a picture of me and my little boy together Plus of her other grandchildren(That is really important !!)More valuable than anything else last one together was 31st May 2015
I am no further on I paid out £400 for the numerologist..Who then said it was complex!!Refered me back to the GP who was more help still awaiting MRI dontvknow how long he said a month well it's longer than a month..I have at the same time been referred to the correct place if anything I think coming of the Baclofen is a mistake !!By the neurologist!!He took me off it for floppy muscles I now still have gloopy muscles but bloody painful spasms do I paid £400 I not wasting anymore PIP to see someone who knew 0 my Dr and Physio seem to know more..I am seeing poor GP at the end off the month and may request the baclofen back I was on 30mg liquid it was gradual reduction,but it's made things worse not better a waste off PIP...
Hi petbar my hubby has cerebellar ataxia 8 yrs now and he gets leg spasms if he's sitting in wheelchair for a while or on sofa I don't think he's had the one you just described but certainly has restless leg syndrome,lots of shakes choking and bad slurred speech.i hope it gets better for you and him in the near future I pray for a breakthrough on finding a cure
pat
Hi my husband has Cerebella ataxia from a large bleed on the brain Jan 2016 he can walk with a frame and one person. His ataxia is helped with Madapar 5 times a day.Its mostly his left side weakened by bleed and mostly left arm.I have been told he will see a movement specialist but he has not to date.
Sue
Thank you for your reply and good luck
Obviously it very individual but I was prescribed Baclofen twice and it did not agree with me so I take turmeric.
You must be careful taking any herbs and I find this site good
Thank you I will give this a try
Painful legs all day
Retirement
Advice with managing pain
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