Peripheral Neuropathy and benign fasciculation syndrome.

Oh yes sir, I stopped all vitamins and supplements with the exception of occasional zinc, selenium and magnesium in the appropriate quantities. These naturally help chelate mercury. Honestly, I’m pretty sketchy of any supplements now. I had no idea how toxic certain fish are( big eye, yellow fin , albacore tuna). I was eating this food in hopes to help with my autoimmune problems (alopecia areata) I believed the fatty acids would help my immune system and keep my hair from falling out. It was an easy and convenient lunch to eat daily. Unbeknownst to me, certain fish are highly toxic if eaten more then 1-2 servings a week. That coupled with amalgam fillings that leave you with a steady blood level of mercury regardless of what you eat. I was on the paleo style diet, probiotics and such to heal my digestive system which put a heavy load of oxylates in my system (also known to cause neuropathy per my research). The megavitamin supplements just added fuel to the neuropathy fire. Then the whopper IV b6/EDTA. Synthetic b6 being known to cause neuropathy and edta known to cause numbness. I basically starved/fasted for months loosing 20 pounds and slowly reintroducing foods. It also appears I am b6 sensitive now. We as modern day humans do not need to supplement B6 if we have a well rounded diet and are healthy.

@sparkysparks
I am continuing to be amazed at all the things that cause neuropathy. Oxalates? I hadn't heard that before. One to add to the list I am keeping. Glad you stopped the b6. My wife recently has cut out any b-complex supplements because they all contain at least some b6 and it seemed apparent that she was reacting to it. And she has always, to this point, been a big advocate of b vitamins, but not any longer if they contain b6. You had mentioned in your first post that proprioception was faulty in your right leg. I was not aware of that condition before. Can you describe what that feels like? Does it happen still or is it under control.

Would you say that your symptoms are significantly better now that you have addressed some of the causes (fish, oxalates, b6, etc.)? Is your situation less dire now than before? Is your bfs/cfs better now? Very interested in you and your case, thanks for posting. Hank

Hi. I have tried all kinds of supplements prescribed by a "functional medicine" doctor. Spent lots of money and finally came to the conclusion that they made no difference. In addition, I have often read that we should not take supplements unless we are deficient in something. As long as you eat a fairly balanced diet (not a lot of junk food, not carbonated soft drinks, etc.) you probably don't have any deficiencies. Ask you doctor to run blood tests to see if you are deficient before you start taking supplements that your doctor recommends. Save your money. I used to be able to shop for our food and cook and I kept us fairly well fed. Since my neuropathy has gotten worse I don't cook as often and I hardly ever get to do my own shopping. My husband has his own health issues and can't always go out to get food. I shop online for groceries and I also order food from Panera a lot because they have salads and soups and sandwichs that are fairly nutrious and they give nutrition information for each item on the menu. I watch the sodium and the fat and that limits me somewhat. We have another local restaurant that delivers food that is hot and like homemade and I order from them frequently. So there are options depending on where you live. Be careful what you take that doesn't come from your doctor.

@catharbert Excellent advice.

Lori Renee, well said. I feel the same! @sparkysparks 🙏😊@jesfactsmon

@sparkysparks and Hank and gang, I just found out that I too have proprioception a few days ago. I thought the Gabapentin was making me lose my perception of space and I am almost falling a lot and bumping into things a lot so I asked my neurologist about this and she told me I have proprioception! I asked how she knew this and she told me when she did the vibration test on my lower legs and feet, that I did not feel them! This was a long time ago! It is so strange how providers do tests on you, even the support staff that takes your Vital Signs and puts you in a room do not tell you what the results are! My goodness! Blood out of a turnip LOL! I have the same questions that Hank does about how you are doing since getting those things out of your diet and body. I hope you are seeing much improvement. Many blessings to all, Sunny flower

To anyone. Why would a doctor not tell you about something like this?

Probably bc there were so many things we talked about at the time? Who knows. S

I think this discussion will interest some of you.
- What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/

I'm glad I found this thread. It was beginning to feel like I was the first person in the history of the world to have this combination of symptoms. I've seen 3 neurologists who just throw their hands up and save lets give it some time and see if it gets better. I was diagnosed with SFN a year ago after skin biopsy which was below the threshold at the hip only. My symptoms were only numbness in my hands and a tingling sensation in my ear, and some nerve pain in my toes. Then one month ago I developed widespread fasciculations in seemingly every muscle in my body, constantly sweaty hands and feet, dry mouth, muscles that fatigue very easily, cramps in hands and feet, lightheadedness when standing or being on my feet for an extended period, and a drastic progression of the numbness and tingling associated with the SFN in my arms and legs and face especially at night. I thought for sure I have ALS and I am still worried about it, but an EMG last week was normal. I have not heard of any link between SFN and Fasciculations until reading this thread. So far, we have not been able to find any cause for my SFN. My only flagged results in bloodwork are slightly low copper, slightly low C3 complement, and slightly elevated bilirubin.