Sensori Polynuropathy ---axon loss in type,severe electrically with sensory fibers. Moderate motor fibers. . Acting up burning, jerking uncontrolled foot movements during the night pins and needles. What plan of action do you recommend.? I just started b1 And b12,omega 3 vitamin amytripolene . The food part is coming together now need supplements to work. Does anyone else have the motor, sensory and small fiber nerves acting together.
Need a good plan of action.

I also use Epsom salts for soaks. Took lyrica too many side effects along with Gabapentin to many side effects.

Uglogirl

I hope the Amytriptolene(misspell) works, I have read good things about it as far as side effects. It hopefully will take the edge off the pins & needles. If you get tender and burning skin, Epsom Salt Lotion helped me to have sheets on my feet at night. The only marked improvement I saw from supplements was when my B-12 went from 119 to over 1000. I was taking methylated B-12 plus monthly injections. Others are better at the supplements than I but I remember that you CAN take too much B-6 and my Neuro stopped me from supplementing Zinc. Exercising to tolerance is a common thread with most. I have gained strength in my legs but it was IMO not related to the exercise. The old saying used to be "different strokes for different folks" and if you read posts you will see that there is little ryme or reason with PN. The only constant is change so you will have to use trial and error to pick your own way through until you find out who the new you is going to be. Good Luck, Ken in Texas.

Thank you Ken in Texas. I will get the Edson salt lotion and continue with the Amitriptyline that was very helpful.
Have you used the alpha lypolic. acid and if so did it help.

I was doing fine have had PN for a year and a half and least I was managing it. I work and during the day didn't have much discomfort get busy and forget about.

It is at night had problems but handled wit Motrin, Ben Gay then it went rampant all nerves sensori and motor too unbearable.


Uglogirl

QSorry to hear you're having a hard time. I don't know if I have motor issues as well as sensory. The only thing I can attribute to motor sensations is the muscle pulling type twitches I get at night. They are not the leg jerking sensations you describe and mine right now are much less then you describe but I will gladly give you my input.

I like the Aspercreme Lidocaine that MrsD mentioned in her post for the burning. It stopped my pre-twitching one night after I applied it. I also like Mortons Lotion. Instead of B1 I take Benfotiamine. I also take Manganese, Slow Mag, B12 Methylcobalamin sublingual, Folic Acid, Omega 3, B complex, Vitamin C and D3. I am on 300mg Gabapentin at night. Even at this low dosage I had side effects immediately but after about 2 weeks my body adjusted. I have never done well with prescription drugs.

Most of these vitamins i have been taking for many months, but some are more recent based on the results I got from the Spectracell Blood Test for Vitamins and Minerals.

My sensations have gotten much more manageable the last 2 months. I wish I could definitively say what has helped the most but it has been impossible to conduct a real scientific type study when I was suffering and just wanted it to stop.

I think the Lidocaine, Morton's lotion, Slow Mag, Benfotiamine and Gabapentin have probably been the most useful for helping the symptoms you describe. However I can't be sure as there is a reason behind every supplement I take. Of course what is working for me doesn't mean it will work for you. It doesn't even mean if will work for me tomorrow! Hope this helps. You can pm me if you have questions.

Boy do I hear you. I was so scared in the early days I started on every recommendation I found. Now I take so many things I don't know what works for sure and what does not. Not a good position to be in. Some of it has really helped so I'm very grateful for that. I just wish I could discard the non working parts. I'm slowly starting to try and identify them.

But things are still moving along and I'm slowly getting worse for it. But I do know what topicals have done and they have done a lot for my pain issues of all types it seems. And stress reduction has been huge. So I like to pile on the creams. I feel like a Hollywood starlet with all the creams I put on before bed especially. It takes a long time to actually get into bed.

Ben Gay might be trouble to some in the same way some cannot use topical pepper extracts(Circumin?). Yes I use ALA and I cannot tell you if it helped. I can tell you it didn't hurt. I stopped taking the B1 because that is one nasty, stinking pill. I would get it a couple of inches from my nose and the smell told me I was fixin to swallow the whole pharmacy. I haven't tried the new Aspercreme with lidocain but for deeper than topical relief it sounds promising. Other people flare on nightshade veggies, carb overloads that turn to glucose in the blood. If you use the search function here for flares and read the things that go on. I apologise if you have used Ben Gay in the past with success but I know that some would think that would be taboo. Good Luck, Ken in Texas. P.S. Correction, the pepper extracts include Capsaicin not Circumin.

The benfotiamine does not have the odor that the regular thiamine does. It also does not make the urine smell yeasty either.

It is another improved version of thiamine.

Hi, I have sensory motor with axonal damage and then some. I was progressively worse for a few years with major disability and pain. I am doing very well now. Supplements had a lot to do with it. I interchange more than 20. It's a lot but I have a good quality of life and not much pain. I have regular labs to see how my liver and kidneys are working.

I started slowly but noticed improvement right away. If I had to narrow my list it would be this. I think it's so important to know where your supplements come from to avoid pesticides and such. Now makes a clean supplement and is not too expensive.

D3
B12 methyl form on empty stomach
Calcium citrate broken into 2x daily 20 min before meals
Magnesium citrate broken into 2x 20 min after meals
Nac as the antioxidant 3x daily
And a banana if there's still cramping. Between the calcium, magnesium and potassium, I noticed overall less pain and I don't have any cramps or leg jerking. Iron deficiency will cause jerking too.
I broke them down to help the body absorb and get rid of what it can't.

I think the Spectrum and Nutreval are the way to go. I would still be critically ill without having done them.


I chose NAC to start because I don't know the cause of my neuropathy. I suspect a genetic factor that prevents me from clearing pesticides and metals from my system. I have signs of liver involvement that show up in my skin. I want to mention be careful if you have diabetes.

This is a good overview of NAC.

http://www.futurescience.com/nac.html