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Peripheral Neuropathy? Family history? Don't wait!

Neuropathy | Last Active: Jul 4, 2023 | Replies (34)

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@njed

@ray666 - Ray, on your comment about the ALA - I too was on 1200 mg daily for about 2 years and did not see much of an improvement. Or would the PN be worse without the ALA?? I mentioned to my doc at one time that I feel the progression of PN takes place in what I refer to as steps. Unfortunately, none of the steps are upward, they are going in the opposite direction. I feel my numbness is about the same as it was a year ago, but the balance is definitely worse...which I have noticed will sort of hold at one level for 6 - 9 months and then, another step downward. The cause of the PN (good luck!) could also dictate the speed of the progression. I went to 600 mg of ALA for a half a year, 4 months ago, went back again to 1200 mg daily. Now, I'm taking the R-ALA. No noticeable difference but it is not worse in past 4 months. So, not getting worse in 4 months....is that an improvement? Not sure if others have these "steps" and when I see my neuro doc in Sept., this will be discussed. My non-medical thinking is this, if ALA or R-ALA can slow down progression, isn't that a clue for stopping it? Not a cure, just stabilize it. Best of luck with your EB-N5 as well.

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Replies to "@ray666 - Ray, on your comment about the ALA - I too was on 1200 mg..."

Hi, Ed (@njed) – I know what you mean by one step up, three steps down (no handrails, either). That's how it's been for me. I see my neurologist, the one who suggested EB-N5, next on 8/8. I'm already prepping with questions. He also wants me to meet with his PT supervisor, who, he tells me, has a lot of experience working with people with PN. I've requested only a one-hour sit-down to start with. I've wasted too much $$$ in the past on PT that got me nowhere––nowhere but a few reams of useless PT handouts that I still have lying around the house here, there, and everywhere. – Ray (@ray666)