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My neurologist diagnosed me with small fiber peripheral neuropathy. He states i also have BFS (benign fasciculation syndrome.) My legs have weird sensations/zaps/pops, especially at night or when I am lying down. Do others have this problem?
My neurologist dx'd me with PN. I have numbness in both feet and ankles. In my hands up to my wrists I have a feeling of sand esp. in my fingers. My feet and hands are always cold. This began @ i year ago. The dx. is a bit confusing because I also have cervical and lumbar stenosis. Lumbar laminotomy and cervical fusion did help the low back pain and upper extremity paresthesia.
I find gabapentin helped a little but I was overly sedated by it. I have mild balance and do not want to fall.
I feel better with Pickle Ball and yoga as my exercises.
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Hi @joekurtz, Welcome to Connect. Thank you for sharing your diagnosis and what helps. There is another discussion on balance that you might find helpful here:
> Groups > Healthy Living > Having trouble keeping your balance?
I have small fiber PN that affects mostly my feet and lower legs. I don't have any pain with my PN but do have the numbness symptom. Do you have pain along with your numbness?
Liked by Teresa, Volunteer Mentor, Chris Trout, Volunteer Mentor
Yes, they interfered with last night’s rest. What did he tell you to do to alleviate the symptoms?
My arms will go to sleep during the night – I don't imagine that's a correct name for the numbness and tingling. It really is pointless for me to go to sleep in a certain position because I move around to any number of positions while sleeping. I'd have to be put in restraints, which I was during one of my hospital stays.
Liked by Teresa, Volunteer Mentor
@jimhd You may want to look at the prior page in this discussion where I talked about thoracic outlet syndrome. My first symptom was my arms going to sleep (numb) while I was sleeping on my side, and for me it was the arm on top that I was not laying on. For me the position of my neck, if it is bent forward can also bring on the symptoms. Physical therapy can help.
@jenniferhunter I did read your post. Limbs going numb and tingly has happened all my life. It always goes away quite soon.
I was diagnosed with bfs and cramp fasiculation syndrome in December 2019. Prior to my diagnosis I had a year of leg tingling/twitching , trigeminal neuralgia and started to have post micturation dribble and g/u dysfunction at the same time . The twitches progressed from my calf muscles and feet all the way up my torso, arms and face. Pretty much everywhere. They turned into hardcore zaps. I had occasional numb toes hands and genitals as well. Did all the neuro and emg. Positive fasics in 6 areas. No evidence of MND. Went to an ND and my tox screen came back with high levels of mercury and barium. I was a daily fish eater for a few years and this was my own logical conclusion from the start. Heavy metal toxicity. Also had Oxalates in urine. However, One session of IV chelation therapy and a month of high dose b supplements my body was set on fire. I was a mess. Now I have full blown neuropathic pain and paresthesias. Hands and feet went ice cold to hot red dependent on gravity. Twitching went through the roof. Lost sensation globally including part of my face that blew up in a painful then numb rash. Rashes all over. Mouth went numb as well. Fingers are now pruned all the time. Proprioception went to heck in my right leg. Many other symptoms as well. So after consulting with a neuropharmacologist/biochemist and my pcp I not only was mercury toxic but vitamin b overloaded as well. Anyone else have similar experience with BFS/CFS? I had a few autoimmune issues as well prior to the BFS. Just wondering if anyone recovered from this rare condition.
Liked by lorirenee1, Hank, sunnyflower
Hello @sparkysparks, Welcome to Mayo Clinic Connect. There is some evidence that vitamin b6 toxicity can cause neuropathy since the body handles it different than the other b vitamins. You might want to join in the following discussions to see if some of the posts might answer your questions.
– Benign Cramp Fasciculation Syndrome: https://connect.mayoclinic.org/discussion/benign-cramp-fasciculation-syndrome/
– Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
– B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/
I'm assuming you stopped taking supplement with b vitamins. Have you had labs done to check the levels of b6 in your blood?
Liked by Hank, sunnyflower
@sparkysparks I thought the same thing as John, B6. My wife, who has PN, has always taken b vitamins religiously, but about 2 months ago she finally quit as every b complex pill she took had some B6 in it. Her PN seemed to flare a lot when she took them and now she believes that has calmed down, no more flares from the B's.
I must say you sure had me doing a lot of internet searching for all the stuff you mention, much of which were new words to me. So it sounds like the heavy metals in your system have caused the neuropathy and possibly all of the muscle twitch/pain issues? Do you think the chelation therapy dealt with the metals effectively? Are there side effects to the chelation drugs themselves that you might be suffering from? A cursory look at an article about them makes it sound like you can get really messed up with improper use of them or administering the wrong ones. Did they question your reaction as to whether it was from the B vitamins or the chelating drugs?
I hope you find someone here in the forum who can give you their firsthand experiences with BFS/CFS. It's always a bummer to have a condition that is so rare as you have a hard time finding help/support from others with your illness. One thing I am learning more and more is how many different things can cause neuropathy. I am beginning to appreciate just how lucky I have been to never get it myself.
I wish you well. Best, Hank
Liked by John, Volunteer Mentor, sunnyflower
@sparkysparks Hi there, I read all you wrote, and my heart goes out to you. I don't even know what to say, as you have so much going on. I think I would just be repeating what Hank said to you, but he can say it so much better than I could ever say it. I just want you to know, that I am here, feeling your anguish. My best, and all the prayers I can muster. Lori Renee
Dear sparkysparks, wow, I am stunned reading your post and what you've gone through and are going through. My heart is heavy; I can't stand what you've suffered and are suffereing!!!!!!!!!!!! I recently began eating salmon and tilapia. First it was mostly tilapia but now mostly salmon, fresh caught wild Alaskan King. Three times a week I've eaten fish. May I ask what fish you were eating and how many times per week? I always weigh mine and know it's 4 ounces. Since my already severe osteoporosis has worsened significantly (daily steroids but before daily mega doses), I've added more vitamin D3 to my diet than is in my multi-vit/mineral and my bone strength medication. How much D were you taking? I can't believe the chelation therapy caused you so much grief! I am so very sorry to hear this! I too have a ton of diseases and full blown SFPN from head to toe w/ organ dysfunction as well. Paresthesias, you name it. Raynaud's disease, oh my fingers hurt something awful! I have to wear exam gloves (give me more dexterity but keep fingers a little warmer than not) but still keep them in a rolled up heating pad every opportunity I have. I have no idea if recovery happens for anyone but I know God can heal when and if it's His will and that either way, He has a purpose in all things. I stand on this biblical truth since knowing Him so intimately and trusting Him in all my circumstances. I will uphold you in prayer and ask that you not only get relief but healing and ZERO pain! Warmest wishes, Sunnyflower
Liked by John, Volunteer Mentor, Hank
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.
Liked by John, Volunteer Mentor, Hank, sunnyflower
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.
Liked by sunnyflower, Erika, Connect Moderator
@catharbert Excellent advice.
Lori Renee, well said. I feel the same! @sparkysparks 🙏😊@jesfactsmon
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