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Charcot-Marie-Tooth UK

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Good evening all.

As a CMT 1a from birth but not diagnosed until mid 40s.. Had both ankles realigned and one rebuilt, taking painkillers until they come out of my arse.

Have in the past six months met a new woman in my life and she has really helped in looking into all different aspects of this shitty disease.

She has found out that magnesium and Co Q 10 helps your nerves and the nervous system. I have waited for three months before putting anything on here to see if it helps. What I have found is that I can now feel more with my fingers, I can now pick a coin off the floor( still fall over doing it 😂) put small gains are massive with this creep of a condition.

I know some of you are sitting there thinking, well he can’t have it to bad… It’s ruined my youth and early years of life, at 21 I was told I had some kind of condition with crumbling bones and probably would be gone as in dead in six - 12 months. So please don’t think that, I just don’t want it to beat me There’s times when I have to hide the pain and there’s times when I breakdown on my own with it.

I know it will win in the end, but don’t let it beat you until then.. I have worked all my life, except after the operations and bought my own house ( okay it’s small & has a bloody upstairs toilet dam)

Look at it like a ride., don’t let it ruin life as it’s trying to do constantly, just keep fighting for every day. Yip it’s tiring but, it’s worth all the effort for even one good day a week.

keep fighting, I’ll keep you updated on the natural wonders. Let’s just 🙏 , keep that chin up.

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GrannyMaz

I totally get you, with the pain killers they help a little, and not at all for nerve pain.... and I have taken Magnesium and CoQ10 for a few years now, if nothing else they help with cramps, if i don't for a couple of days my whole body can cramp anywhere, stomach, back, legs hands etc...So hopefully others will learn about them now and use them..

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