Supplements

Hello Leonard. Thanks for reply. 35 years is a long time. Have you ever got a diagnose of how you got neuropathy? And is yours large nerves or small fiber neuropathy? Did yours ever burn? I have only had this 4 months. First just the bottom of my feet but already coming up to my knees. I myself had EMG on Wednesday and all nerves are working fine. They said no neuropathy. But this feels like it is right on my skin. I suppose that would be called Small Fiber Neuropathy. You take any medications or supplements? Sorry if that sounds nosey. I suppose I am new to this so the Anxiety of it is terrible. Just became a Grandpa 3 months ago. Now worried about what could happen to me. Thanks for your reply. God bless you.

@bettyg81pain Hi, Betty. I have taken Benfotiamine and R-Alpha Lipoic Acid daily for the past year with no obvious side effects. Best wishes! Mike

Hi, Jerry I've been dealing with this for the past couple of years. I'm 72. A year ago, I had a laminectomy at 4 levels in my lower back. Spinal stenosis was causing horrific pain in my hips/legs/feet and I could hardly walk. The surgery resolved the leg pain right away... and it was then that I noticed the numbness in my feet. Like you, I have to wait to see a neurologist. I was referred in September, but the doctor's office is not even scheduling new patients until after January 1st. I see see my podiatrist, and she performed a skin biopsy a couple of weeks ago. She also sent me for an EMG that I had two days ago. I won't get results from all those for two more weeks. After my surgery, I read a lot and watched a lot of youtube videos.... and I began taking R-Alpha Lipoic Acid and Benfotiamine right away. A month ago, my podiatrist added a script for Metanx, a food supplement (capsules) that requires a doctor's prescription and made specifically for neuropathy symptoms. It "seems" to already be making a slight difference. Your mention of anxiety struck a chord with me. I have had issues with anxiety all my life, and this disorder has definitely increased my anxiety levels. I imagine the worst and hope for the best. And the lack of any definitive treatment plan for neuropathy numbness/tingling/pain adds to the "what might happen" in my head. Have you been referred to Physical Therapy to see if that might help at all? I go for a deep tissue massage every few weeks (all I can afford) and that does also seem to provide some relief. I try to walk everyday. I try to get to the gym a couple of times each week to use the machines to get my legs moving. I've bought special shoes to try and find more comfort. Worst for me is the balance issues I see to have from this. They seem minor... and I haven't fallen... but the wobbliness messes with my head. Like you, I also have the sense that I feel the numbness and tingling up my ankles and the sides of my legs at times. I am getting a lot of benefit and good information from the wonderful people in the Connect groups. I hope you are, as well, and that you are realizing that you are not alone!! Hang in there! Best wishes, Grandpa (congrats)!!

Hi, Jakei... Gee, 35 years is a long time to deal with this disorder! I suppose you have had MRIs and tests done to rule out your back contributing to this? You said it perfectly... "the numbness is irritating." I totally agree! What kinds of supplements and/or treatments have you tried through the years? Best wishes! Mike

@jerryw
CONGRATUATIONS on becoming a Grandpa. Grandson or Grandaughter? I was afraid my post might make you concerned but I thought it was better to be aware. I have Epilepsy and many doctors never inform their patients about the serious conditions S.U.D.E.P. (Sudden Unexpected Death in Epilepsy.) and Status Epilepticus. Both potentially deadly.
I had seizures every day or every other day sometimes many a day, so I consider myself lucky because I was unconscious or asleep so much of the time, but I didn’t feel the pain as much as most of you do.
But you’ll drive yourself crazy if you worry about “what ifs”
99% of the things you worry about will probably never come true and the other one percent is gonna happen anyway.
Yes, I had the burning, stinging, pins-n-needles, water dripping down my legs, tingling, numbness. My neuropathy was caused by the seizure drugs Dilantin, Phenobarbital and Carbitrol and others may have contributed to it.
I’ve never taken any supplements for my neuropathy. I don't have much faith that they do any good. For the price I’d want excellent results which I don't hear much about. and I have absolutely zero confidence in anything sold over the Internet for neuropathy and will not order anything off the Internet. i’ve heard of people paying up to $10,000 for various treatments devices, etc. I have more confidence in my doctors than I do the Internet. I live in California and I called a neuropathy clinic in Atlanta Georgia and asked “ how do you cure an incurable disease,” but was gone when they called back which I'd probably just as well. Although I did take 3600 mg of Neurontin and don't remember my Lyrica dose but neither helped the neuropathy or seizures.
I did take strong opioids, mainly fentanyl patches, which did help some but the main reason for using the patches wasn’t neuropathy. It was just a benefit.
Feel free to ask me any questions.
Accept the condition and its consequences and don't let anxiety or depression take hold. They will only do you more harm. When I got ED, obviously, I didn’t like it and I certainly don’t like paying $30 for an injection to get an erection.
Acceptance, I believe is key. The road may get rougher but life goes on.
If you have any questions just ask, my life, what I remember of it is an open book.
Blessings,
Jake

So you do feel like you are having less pain with the combination? I am taking the R-Alpha Lipoic Acid- 2 Extra strength Tylenol twice a day and 2 Tramadol twice a day and still have pain so am sure looking for anyway to be pain free!! Thanks!!

I can't say that the supplements were responsible for making me "better," but I'd like to think they contributed to me not getting any worse. I have numbness and tingling in my feet/ankles/shins, but I've not had much actual "pain." So sorry to hear that you have the pain that so many others experience. Have you had physical therapy? Have you seen a pain specialist? Have you tried any steroid injections? Have you heard of the spinal stimulator for pain? Things work differently for different people, so what works for me may not work for someone else. It's frustrating, I know. So much of this is trial and error. I wish you well!! Mike

@jerryw
I don't know what specific type of neuropathy I have, only that it's polyneuropathy. My tests showed mild neuropathy. That was many years ago.
If they say “no neuropathy” what if any diagnosis did they give you?
Take care,
Jake

@domiha
Yep, lots of tests and scans. My back is okay except for some arthritis.
Jake

Thanks for reply Jake. Sure are alot of caring people on here.. No complete diagnoses yet. I can't even get into Neurologist here in St Louis area until mid March. And I made that appointment back in first week of October. This world should be focusing on regenerating nerves than handing out meds that do not help. You know out of 40 million people with Neuropathat only about 1/3 is from Diabetic.
Most Neuropathy victims get it from poisoning pharmaceutical medications. And ofcourse many other items man has created. This comes from " Foundatifor Neuropathy " website, about Small Fiber Nerves and if they can regenerate.. "Yes, small nerve fibers are quite robust in their ability to regenerate. Moderate intensity aerobic exercise, followed by healthy diet (unsaturated over saturated fats) has been the two modalities most convincingly shown to slow or reverse SFN damage in human and animal subjects, respectively." If this is true than why aren't we focusing g more on this than just prescribing medications that do nothing. We are in a world of Pharmaceutical Dependance, and so many medications that can lead to neuropathy. I am going to call around to see about finding where I can get a skin biopsy done, that is a much more reliable test for Small Fiber Neuropathy.