John Miklosh
Forum Replies Created
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Hello,
I am 4 years in as well and am 53 years old. My left leg is exactly as you describe and I too have found no help from the doctors on this. My fixes are heated socks, loose fitting shoes or boots, over the thigh socks, heating blankets around the house and eleavting my legs whenever possible. Acupuncture seemed to help me in the beginning but provider is not ADA accessible any longer. Massage would be helpful as well. Hope this helps!
ALS Strong,
John
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I was taking the 3 R’s for a while but the side effects of Relyvrio made me decide to stop that medication (plus it tastes horrible, lol). I do wish there was some way to quantify the effectiveness of one or any of those medications. At the end of the day it is up to each individual to decide if the risk is worth the reward! I guess you just have to hope and trust that it is doing something for you.
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I took it for about a month. The taste is absolutely horrible, hands down the most vile tasting medicine I have ever had the displeasure of taking. Due to the overwhelming amount of sodium in the medicine, my feet and legs were swelling up making it difficult to walk with my crutches. I decided to quit taking it, the side effects just weren’t worth it for me. It would sure be nice if they could cut down on the 3500mg of sodium and maybe out it in a pill form or flavor it with something. I admire you folks that can suck down 3 of those packets a day, wow, lol.