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kimcvi (@kimcvi)

Myotonia Congenita

Neuropathy | Last Active: Jan 27 6:19pm | Replies (151)

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@avmcbellar

Hi Rachel @rwinney. I have discovered, at least for me, the increased strain on my eyes is due to my muscle weakness and neuropathy. I had started taking an alpha lipoic acid(ALA) supplement. After a couple of months I stopped taking it when I figured out it was causing my stomach and esophagus burn. Since I stopped I learned that it was the supplement that improved my energy. I believe it is the ALA that helps the body better utilize the glucose for energy. I had noticed an increase in burning pain from my neuropathy, a decrease in energy, and an increase in eye strain. My photobia remained unchanged for now. I just need to figure out how to take the supplement for its benefits without the side effects. I have emailed the manufacturer for advice and waiting for their response. Hope you find this helpful for your health.

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Replies to "Hi Rachel @rwinney. I have discovered, at least for me, the increased strain on my eyes..."

@avmcbellar Hi and thank you for the advice from your personal experience. I take the "Protocol" (@johnbishop) -supplement regimen for my neuropathy which contains high levels of R- Alpha Lipoic Acid. My neurologist recommended ALA as well as Acetyl L Carnitine for neuropathy. I've been on the regimen since last September and just recently vacationed from it for one week. I cant specifically tell you I felt a difference in my eyes being off it, but definitely my neuropathy. I'm sorry your stomach didn't handle ALA well but. I think it's a great idea to reach out to the manufacturer. Are you aware of the Protocol (through Facebook)?

Hi @avmcbellar my wife and I both take RALA. from Life Extension. We both are aware of gastro issues with it, but usually are okay when we take it with food. If you have not done so you might try ordering it in 100 mg pills (I believe Drs. Best offers it in 100mg) and take more pills spread across more time or with different meals in the day. Linda did try the Protocol at one point but decided it was not for her, but I do remember that they ramp you up to the 1200 mg.day by starting you out with the 100mg dose several a day for a few days to get people past the stomach upset. Anyway, something to try if it helps. Hope you are doing well. Best, Hank