Was just wondering if anyone was taking any drugs that helped with their symptoms.
I have SCA1 and my neurologist suggested Pregabalin (Lyrica). Im on a very low dose but it does seem to help smooth out my movements.
I take all the vitamins, co-q 10 etc, but was wondering if anyone was taking anything else that works.
Scotty,
Do you take magnesium 420 mg? If you have kidney problems a doctor should be involve. For my slurring and choking
I use calcium 1000 mg 500 mg magnesium vitamin D3. If you are deficient in magnesium a lot of vitamins will not function in the body. Magnesium is a helper enzyme cofactor for a lot of vitamins such as B1 and B12. Here is a PubMed article that states this. http://www.ncbi.nlm.nih.gov/pubmed/4050546 Can you tell me all the symptoms you are having?
Scotty,
Here is another PubMed article PubMed stands for US government medical library.
Scotty,
Here is a article by NAF diet for ataxia. I feel they are a little short on magnesium their recommendation for magnesium 100 mg RDA recommend 420 mg male and 350 mg female. I take 500 mg 1/2 dosage morning and night. https://www.ataxia.org/pdf/Ataxia_Diet_FAQ.pdf
Hi Steve,
Not taking Magnesium currently, but will have a look. Thanks.
Was diagnosed 2 years ago and have seen a steady decline in my abilities. I still walk without any aids at the moment, but do stumble and lose balance. I sell cars, and fell at work for the first time. I take 75mg of pregabalin in the mornings. It seems to help with stiffness.
I do have tremors. My hand shakes. I cant carry drinks. Its worse if I feel someone is watching. I know the mind makes everything worse.
I don't choke to often at the moment, but I know that's to come.
I used to run, but its too hard now. I go to the gym once a week. Lifts weights and then go on the cross trainer. It does seem to help. The trick seems to be not to overdo it. To try and get stronger without tiring yourself too much.
Scotty,
When I was in my early 50s I also would stumbled. I remembered walking down the hall and loose control of my foot and stumble.
When I was working I would drink 6 cups of coffee a day I found out coffee depletes your magnesium in the body. I found out magnesium is a helper enzyme cofactor to a lot of vitamins such as B1 and B12. I had a painful stiff muscles in my back and legs. My left hand would tremble when I carried a cup I would go to the gym and when I worked out to hard I would have back spasms. Then finally in my early 60s I would get painful nocturnal leg cramps. When I took calcium magnesium vitamin D3 all the muscle stiffness went away. My friend had a stroke and is paralyzed on his left side called I told him to see a doctor he said he did not want to see a doctor and asked what I did for painful nocturnal cramps? I told him I take calcium magnesium vitamin D3 he tried them and he came back the cramps where better but he still had some cramping. So I suggested B1 in the form of sulbutiamine and vitamin B5 200 mg he said this got rid of all his cramps. RDA recommends 1000 mg calcium 420 mg magnesium vitamin D 600 iu for males over 50. Since you take pregabalin you should see your doctor before taking magnesium like JC suggested.
Scotty,
Here is a article that states the importance of magnesium. http://drsircus.com/medicine/magnesium/magnesium-deficiency-symptom..
The suggestion B1 and B5 to my friend was additional to calcium magnesium vitamin D3. I am 72 now with severe gait disorder do to cerebellar atrophy so do everything possible to prevent cerebellar atrophy.
Haha! Very true John. I already rattle when I walk!
John "JC" Colyer said:
you can also just get expensive urine from it
Scotty,
JC doesn't want me to give advice but if it was me I would ask the doctor for a RBC magnesium blood test asap.
Scotty said:
Haha! Very true John. I already rattle when I walk!
John "JC" Colyer said:you can also just get expensive urine from it
Hi Steve,
Have bought what you suggested. Will let you know how it goes.
Steve said:
Scotty,
Do you take magnesium 420 mg? If you have kidney problems a doctor should be involve. For my slurring and choking
I use calcium 1000 mg 500 mg magnesium vitamin D3. If you are deficient in magnesium a lot of vitamins will not function in the body. Magnesium is a helper enzyme cofactor for a lot of vitamins such as B1 and B12. Here is a PubMed article that states this. http://www.ncbi.nlm.nih.gov/pubmed/4050546 Can you tell me all the symptoms you are having?
Hello Scotty
I have SCA1 too. I was using poles, now I use a rollator. The neurologists have only tried to get me on Baclofen for easing cramp. It did not agree with me and so I found an alternative herbal supplement - turmeric.
I do not know if anything really helps, but psychologically I feel better for taking them!
Hood luck with what ever you try : )
My neurologist has prescribed Pregabalin [Lyrica] for my muscle ache and nerve pain. I searched this site for any mention of it and found this discussion.
The leaflet is quite scary but then... arent they all!!
I was hoping it would relieve pain and let me get on with life but seems it will just make me more tired.
It says do not drink alcohol too which is disappointing as I like a glass of wine with main meal.
Any comments?
Patsy
My SCA hit me hard when i was 53. I have SCA 14 with myoclonus. I take keppra and klonnapin but it doesn't always keep things under control. I have tremors as well. I take all the vitamins as well (B12 and d deffiecent). I can no longer walk or take care of myself.
Hi Patsy,
My advice is to try Pregabalin. It loosens me up. I take 75mg in the morning. I used to split it. Take some in the morning and some in the evening. Taking it in the evening would make me stumble more as my muscles were too loose.
Just having it in the morning works for me. I havent noticed it making me more tired than I already am.
I like a glass of wine at night too!
Red wines not good for your muscles apparently, so try white!
Patsy said:
My neurologist has prescribed Pregabalin [Lyrica] for my muscle ache and nerve pain. I searched this site for any mention of it and found this discussion.
The leaflet is quite scary but then... arent they all!!
I was hoping it would relieve pain and let me get on with life but seems it will just make me more tired.
It says do not drink alcohol too which is disappointing as I like a glass of wine with main meal.
Any comments?
Patsy
Hi Scotty
,i have SCA1 to, my wife is a pharmacist so i try anything and everything out there but haven't found anything besides exercise that is beneficial
have you yet?
Hi Nath, still Pregabalin. Now I take slow release beta-blockers as well. Seems to help with the shakes. You could try them?
yeah thanks bro ill hit up my nero. or DR up for a script(whoever i see next)
Cool. Let me know how it goes
HI there, is there a similar diet for people with SCA-3?
Thanks!