1. < Neuropathy

Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Interested in more discussions like this? Go to the Neuropathy Support Group.

gzr7 | @gzr7 | Oct 28 4:37pm
In reply to @carolinlv "I am having blood work too see how my numbers look after four months without statins...." + (show)
@carolinlv

I am having blood work too see how my numbers look after four months without statins. They’re going to have to be really awful to make me go back on that drug. Dietary changes aren’t as bad as they sound and you get used to them. I don’t eat baked goods anymore, no red meat, and I try and stay away from saturated fat and added sugars in all foods. I’ve lost over 30 pounds which I’m sure will help. Unfortunately, unlike you, I still suffer the numbness in legs and feet this many months after stopping. I can’t positively blame it on the statin, but I didn’t have it before I started them. I hope you are able to find a solution in one of the newer options that are non-statin like Repatha or Praluent. Good luck to you!

Jump to this post

Thank you for your reply, it was very helpful. I haven’t got my diet sorted yet. It will probably take some time to make the changes. I haven’t heard of Repatha and Praluent, but I will look into them.
I hope your numbers are good at the checkup.

REPLY
1 reply
carolinlv | @carolinlv | Oct 28 6:20pm
In reply to @gzr7 "Thank you for your reply, it was very helpful. I haven’t got my diet sorted yet...." + (show)
@gzr7

Thank you for your reply, it was very helpful. I haven’t got my diet sorted yet. It will probably take some time to make the changes. I haven’t heard of Repatha and Praluent, but I will look into them.
I hope your numbers are good at the checkup.

Jump to this post

Both are injections done twice a month I believe. Most insurance does not cover it initially, but I had three different statins that did not agree with me and my cardiologist was able to push it through easily.

REPLY
kbirchem | @kbirchem | Oct 28 9:01pm
In reply to @cecelia19 "Please tell me what the brand of ALA is that you take and how much." + (show)
@cecelia19

Please tell me what the brand of ALA is that you take and how much.

Jump to this post

I take 1200 mgs per day . I take 600 mgs in the am . I take 600 mgs at bedtime . It is R Alpha lipoic acid .

REPLY
kbirchem | @kbirchem | Oct 28 9:03pm
In reply to @cecelia19 "Please tell me what the brand of ALA is that you take and how much." + (show)
@cecelia19

Please tell me what the brand of ALA is that you take and how much.

Jump to this post

I take 1800 mgs per day . I take 600 mgs in the am . I take 600 mgs at bedtime . It is R Alpha lipoic acid . I also take 600mgs in the afternoon.

REPLY
1 reply
cecelia19 | @cecelia19 | Oct 28 11:03pm
In reply to @kbirchem "I take 1800 mgs per day . I take 600 mgs in the am . I..." + (show)
@kbirchem

I take 1800 mgs per day . I take 600 mgs in the am . I take 600 mgs at bedtime . It is R Alpha lipoic acid . I also take 600mgs in the afternoon.

Jump to this post

Thank you! I wouldn’t have thought to take more than 600 mg so maybe increasing the dose is what I need. Also, I was taking the “S” form.

REPLY
cecelia19 | @cecelia19 | Oct 28 11:10pm
In reply to @kbirchem "I am currently taking gabapentin . It has been a lifesaver for me . I had..." + (show)
@kbirchem

I am currently taking gabapentin . It has been a lifesaver for me . I had been on Lyrica . It is an evil medication . I was constipated , anxiety attacks and very dark, dark thoughts . Every person will react differently to medications . Do not give up . It is so hard to keep going when you are in pain . There is nothing you cannot do with planning .

Jump to this post

It has been a lifesaver for me too. How much do you take? Right now I am on 300mg 3x/day but have been advised to increase to 600mg 3x/day over the next month to eliminate breakthrough pain. Wondering if that seems like too much.

REPLY
2 replies
gzr7 | @gzr7 | Oct 29 3:35am
In reply to @johnbishop "Welcome @gzr7, My primary care doc wanted me to go on statins 5 or 6 years..." + (show)
@johnbishop

Welcome @gzr7, My primary care doc wanted me to go on statins 5 or 6 years ago (81 now) but I already have neuropathy in my feet (numbness, no pain) and didn't want to make it any worse. After a few lengthy discussions with her I decided to work on lowering my cholesterol numbers by diet and lifestyle changes.

There are quite a few discussions and comments on statin alternatives. I think there also maybe newer non-statin cholesterol drugs on the market but I'm not sure. It is important to discuss with your doctor and come up with a plan. Here's a link to the search results for discussions and comments by members on statin alternatives - https://connect.mayoclinic.org/search/?search=statin+alternatives+.

It's great to hear you are active and healthy and probably already doing most of these suggestions from Mayo Clinic but it might be helpful for a checklist.
-- Top 5 lifestyle changes to improve your cholesterol:
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/reduce-cholesterol/art-20045935

Jump to this post

Thanks John, I appreciate your very sensible comments and suggestions. I look forward to investigating statin alternatives and lifestyle changes.

REPLY
heisenberg34 | @heisenberg34 | Oct 30 9:30am

I have severe PN. Walking any distance is very problematic. Sitting is painful. I have tried some at-home exercises, but they only ramp up my pain. Does anyone out in Mayoland know if there are physical therapists who are able to treat patients with my affliction? Would like to be able to do SOMETHING.
Thanks to all. Have a blessed day!

REPLY
1 reply
natelew | @natelew | Oct 30 9:47am
In reply to @cecelia19 "It has been a lifesaver for me too. How much do you take? Right now I..." + (show)
@cecelia19

It has been a lifesaver for me too. How much do you take? Right now I am on 300mg 3x/day but have been advised to increase to 600mg 3x/day over the next month to eliminate breakthrough pain. Wondering if that seems like too much.

Jump to this post

I too take Gabapentin 300mg 3x a day. I just had my EMG done on my lower extremities today, the upper extremities will be done next week. It’s a shame that so many people suffer with PN and it hasn’t been any new treatments that can relieve the pain we are experiencing.

REPLY
Leonard | @jakedduck1 | Oct 30 9:49am
In reply to @kgitti "FOR what its worth, I have CIDP, chronic inflammatory demialating polyneuropathy. I take a high dose..." + (show)
@kgitti

FOR what its worth, I have CIDP, chronic inflammatory demialating polyneuropathy.
I take a high dose of gabapentin and Topamax. I have no nerve pain. If I stop taking those, severe debilitating nerve pain returns, so they are working.
Just my experience.

Jump to this post

@kgitti
My Neurologist tried giving me Dope-a-max as it is often called in Epilepsy circles which I refused. I'm just curious, if you have experienced any ocular side effects from taking Topamax? I have known too many people that took it and ended up with serious visual defects and including blindness. Many seizure medicines cause visual side effects.
Thanks,
Jake

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.