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Originally Posted by Lerch
Hi Atticus, I'm sorry you have this dx. For me, and I have large fiber/axonal though, it's 24/7. What kind of symptoms do you have? If it's off and on, that may be good sign that something you're doing is activating it. You may be able to figure that out. Scan the board, use the search function and you'll likely get some ideas to try, like activities/diet/supplements etc. You might also consider a 2nd or 3rd opinion, doctors vary quite a bit in experience and motivation to help folks with this disease. Good luck!
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Lerch, thank you for your reply. Pretty much burning in my feet is the most annoying symptom. Especially when at work with my shoes and socks on. I find being home without them on most comfortable. I haven't been diagnosed, not yet at least -- but one neurologist didn't rule it out.
I've also seen an endocrinologist and he couldn't see anything metabolic.
It didn't get better (not much at least) with abstinence so I'm thinking it may be not be alcohol related but the neurologist said drinking wouldn't help even it isn't related.
I do vape quite a bit and I'm certain nicotine doesn't help. Probably drink too much coffee. Not sure what affect that has, since I drink coffee mostly in the morning but in the afternoon is when symptoms most bother me. I tried vitamin supplements (all the major ones, benfotiamine, ALA, B-12, zinc magnesium, etc.), and I'll be cutting those back (my doctor thinks I'm taking too many supplements, which can affect other stuff). Anxiety about it makes is worse for sure, and I think that's an issue.
I'm truly at a loss, and fortunately it's just an annoyance. It doesn't affect my ability to walk or do anything but it's terribly distracting.
I'll read others experiences. For now, I'll reduce my host of vitamins (a good multivitamin with B vitamins and D3), reduce my caffeine, and try to quit vaping.