Hi, A about a year ago my 47 year old sister was tested positive for SCA1. I was negative. She is still taking it rather badly and I am trying to support her. She is suffering from muscle cramps in her legs and arms muscles. Is this usual for this condition? If so is there any treatment?
Many thanks, Lynn
Hi Lynn😊 Yes, there are medications for muscle cramps. Though it has to be said that it can be a case of trial and error, as with most medications what works well for one person... 😏
Initially, I didn't have any suspicions about a probable diagnosis, I'd never heard of Cerebellar Ataxia, so initially I was reasonably calm. But, it must have been so different for you and your sister..
When the time is right, she may feel like talking to other people who cope with similar symptoms🙂 If you haven't already done so, look on ataxia.org.uk for a link to local Ataxia Support Groups🙂xBeryl
Welcome
I understand how your sister feels. I too have SCA1. I was tested way back in 1995 (one ofthe earliest to be offered testing). It is a real shock at first. Unfortunately 2 close friends/relatives died suddenly and this helped me realise that even though ataxia is cruel, I would rather be here.
Your sister needs to try and stay as fit as she can and eat healthily and keep trying (hard at times). You have to find what works for you because we all have different symptoms and problems.
Some people find Baclofen helps for cramp but it does not agree with me. I take organic turmeric but you must be careful with any herbs (I take a lot - lol!). This site is good to check stuff
mskcc.org/cancer-care/diagn...
If I am having trouble with cramp in my legs I have discovered a way of sorting it. Sounds silly but if you pretend to pray (my Dad had ataxia but did not seem to suffer with cramp and he said his prayers every night by his bed). I am not religious but it works for me.
Hope this helps x
Hi,
I also have SCA 1 and suffered from muscle cramps for a while, especially at night when the cramps would wake me up. I now take a magnesium supplement and haven't had any cramps for months. If you Sister has problems digesting magnesium it is possible to buy a magnesium spray and rub it in to the affected areas. Finally, light stretching exercises might help.
Good luck
Hi Lynn, I'm afraid that the muscle cramps are part of the condition. I actually have spasms now, which are even more intense, and take more effort to get rid of. I find that a heating pad works best. But if there is nerve pain, I use ice packs. Isn't this a fun condition? I am new to ataxia, and am having problems adjusting to it myself. I can't even sleep at night as I am so mad about it. It was caused by doctors who used too much anesthesia for a surgery. So unnecessary!! My balance problems are so bad that by day's end, I am in a wheelchair. My feet feel like bricks and have NO feeling in them after a long day. I have other symptoms too. Please give your sister my best, and if you want to communicate more, my email is patimcm09@gmail.com. My best to you both, Patti Tilden
I very sorry to hear that your condition was avoidable. It is very difficult to know what to say. I hope that you are getting the support that you deserve. Thank you for your reply. Lynn
Hi again Lynn, I did not see the earlier comments, so feel a need to speak to them now. As Beryl said, there are meds for cramps, but for me, the meds have a rebound effect. I, too, take extra mineral supplements, especially magnesium, and also vitamins B6 and B12 for the nerve pain. The supplements don't stop things, but they do reduce them without rebound or side effects; at least for me. Just an FYI. Hope that this helps!! Patti
Hi I will pass this info on to my sister too. Thank you. Lynn
Hi Lynn, I thank you for your kind reply. There really isn't anything anyone can say about my situation. But, I forgot to say that I found a magnesium supplement that I like most: it is made by Jarrow Formulas and is called Magnesium Optimizer. It also has potassium and taurine in it which seem to help it work better than a straight mag only. I have also just found a natural enzyme that helps with pain as it reduces inflammation in the body. It is called Serrapeptase. The best brand for that is made by Nova Nutritions. You can purchase both on Amazon, and will probably find the best prices on them there. Now that I have taken the Serra for awhile, it has had a chance to really work in my body, and my pain is greatly reduced as of NOW. It took 2-3 weeks to get into my system to work so well. I have also doubled up on the magnesium, and that should help your sister as well. Again, good luck, and let me know how it goes. Thanks again, Patti
Hi I get muscle cramps and take magnesium supplement which I buy from Amazon these help me allote
get a good one such as lifeextension
Hi Lynn
Yes it does take a while for it to sink in & come to terms with it but from my own experience it does get easier mentally once that happens! I'm 46 years young and can hardly walk but despite all of the problems I endure (as all ataxians do), I keep cheerful & plod on. Yes it's extremely difficult & I do have down times but I do try & make the best of a bad job. We are all different but have to make the best of a terrible illness. I try & stay positive which really helps.
As for cramps. I suffered with it in my legs mainly. I ate bananas (potassium) & drank tonic water (quinine). Quinine can be prescribed by a neurologist but as it's very potent cannot be bought over the counter I understand.
Trial & error! What works for 1 doesn't work for another.
As has been said, turmeric is great too. I eat lots & it's only a food stuff! Look up. People are raving about it! Magnesium is the 'new kid on the block ' & is being raved about.
B vitamins have also been mentioned. Essential for nerves, energy, balance etc. Vitamin b12 injections are given to my uncle. Again look up.
Google or another searching website is the best way of finding out about things I find. Being knowledgeable really helps me with my ataxia (CA) but I have other problems too.
Co enzyme q10 is worth looking at. I have taken this since 2009. It's supposed to be useful for some ataxias & people who take statins too.
Ataxia UK may be able to advise on the best course of action & it may be worth your sister going to a support group if she can. It opened my eyes. Helped me realise I'm not alone & advice given was invaluable.
Lastly exercise is essential both mentally & physically. Exercise may help alleviate cramp? Remember not too much (don't want to damage further or become too fatigued) & safety is paramount.
Sorry for waffling. Stay safe & tell your sister to keep her chin up🤗
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