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Neuropathy: Numbness only, no pain
When I was first diagnosed with idiopathic small fiber peripheral neuropathy and numbness was my only symptom, my neurologist told me that I am one of the "lucky" few who didn't also have pain and other associated symptoms of neuropathy. I knew there were others out there but yesterday I met my first member on Connect who has a similar diagnosis. I want to thank that member for joining Mayo Clinic Connect and sending me a private message that I would like to answer here to start this discussion.
Hello @afirefly, Welcome to Connect. You mentioned being diagnosed with large fiber demyelinating predominately sensory peripheral neuropathy at Mayo Clinic. The neurologist's recommendation was exercise and balance exercises. Your symptoms are less than one year and are primarily progressive loss of sensation in your hands and feet. You also said aside from occasional muscle cramps in your calves and dyesthesias in hands and feet, you experience little discomfort. Your greatest concern now is the degree of disability you will have as the numbness progresses.
I can tell you that we think a lot alike. When I walked out of the neurologists office with similar symptoms of just numbness in the feet and lower legs with no pain – and no recommendations for treatment, I was pretty down. I was told to let them know as the condition progressed and my biggest fear at the time was not being able to drive myself. That's when I started doing my own research and found Mayo Clinic Connect after being diagnosed with idiopathic small fiber PN.
You have some really good and thoughtful questions which I will try to answer the best I can.
Question: Although you have improved on the Protocol, did you ever have complete loss of sensation in your feet? I ask because I truly dread the possibility of total sensory loss in my feet.
Answer: I never had a complete loss of sensation in my feet. At the worst, they felt numb and sometimes tingly but not painful, just uncomfortable. They mostly always feel cold and after being diagnosed with lymphedema I have to wear compression socks which doesn't help the numbness feeling. I have noticed that it seems like I've had some feeling returning ever so often when I'm exercising on my crossfit exercise bike. I use it several times a day for 30 to 45 minutes when I can to build up leg and arm strength. I recently purchased a device called a Sand Dune Stepper to work on my balance issues. I do think it helps and I've noticed a little more feeling in the bottom of my feet – if that makes sense for numb feet. Website – https://www.sanddunestepper.com/
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Question: Assuming you have little or no sensation in your toes and the soles of your feet, are you still able to drive a car?
If yes, would you kindly tell me what maneuvers/measures you have used over the years to compensate for the absence of feeling in your feet while driving?
Answer: I am still able to drive a car. The numbness was always a concern in my mind but never kept me from feeling the pressure of placing my feet on the pedals and pushing them down or letting them up.
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Question: Assuming you have little or no sensation in your toes and the soles of your feet, how difficult is it for you to walk? Before my neuropathy, if my foot was in a position too long it would "go to sleep" from lack of circulation to the nerves. The sensation would return seconds later once I changed my foot position. However, I don't believe I would have been able to walk on that sleeping foot until the circulation had been restored. Please tell me if there are/were any maneuvers/measures you have used over the years to compensate for the absence of feeling in your feet while walking.
Answer: When I was in my late 40s, my wife would sometimes tell me that I walk like an old man and now I am one and still walking the same. I've always been slow getting up and slow to take the first steps when walking. I guess I would call it trying to be careful because I wasn't sure of my footing. I think recognizing that your feet may not be as steady is a good thing and keeps you alert when walking. I struggle with walking any distance due to lower back issues. I recently had some physical therapy to learn some back and stomach muscle strengthing exercises which has helped some. Now I just have to execute a plan to do them often.
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Question: You indicated that the cost of the old Protocol was under $10/day (prior to 525 Protocol) several years ago and that the current 525 Protocol is $6.44/day. Does that mean Protocol 525 these days costs somewhat less than the old (original) Protocol?
Answer: Each item in the original protocol lasted a different number of days so the cost was more spread out and roughly calculated at under $10/day. The new 525 Protocol is a 30 day supply for $6.44/day ($193.20). It's also fewer pills to swallow which I really like. The Ramp up version is different due to the R-ALA in the regular 30 day supply. The daily R-ALA dosage is 1200 mg which causes some people to have stomach problems so the ramp up is to gradually increase the dosage to get use to the higher amount. I never had an issue because I was already taking supplements for the PN from my research and was taking that amount of ALA before I found the original protocol. Related discussion — Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/
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Question: Do you use orthotics or inserts in your shoes? Special shoes?
Answer: I've tried some orthotics and different inserts but don't always use them. I found some felt/wool inserts that I like during the winter time as an extra cushion. I do like Sketchers because of the memory foam cushion and comfort. I used to wear the canvas shell ones but my neurologist told me it would be best to wear shoes with good side support for walking. So, I try to choose slip-ons with good side support made out of leather. There is another discussion on Connect you might find helpful for shoes – If the shoe fits…right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/
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Question: Besides daily foot exams, lotion to your feet, and avoiding barefoot walking, are there any other measures you use to protect your numb feet?
Answer: For me, this all started with a trip to the ER after waking up one night to go to the bathroom and when reaching the bathroom seeing blood all over the floor and trying to figure out where it's coming from. Surprised was I to see it pumping in a small stream from my ankle. Long story short, I unconciously rubbed my feet during the night and I had a hang nail on my big toe which tore the skin and part of a vein close to the surface. After that episode, I always wear white short loose socks to bed and I apply lotion to my feet and legs to keep them moisturized. I think that also helps with the healing process when you think that there are tiny sensory nerves just under the skin and it helps to keep the skin moist to protect them.
Hope this helps…let me know if I missed anything or if you have any other questions. We have a great group of members with a lot of experience here on Connect.
John
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Hi Jake, I wasn't aware of that there are stages of numbness. I have heard stages assigned to levels of neuropathy but never thought much about them. My numbness started in my toes in my late 40s and then gradually crept into my feet and to just below my knees in my late 60s. I had very little feeling in the feet but did have some feeling in the legs around the knee and calves. I started the supplements in 2016 after being diagnosed with small fiber PN and being told there's no treatment that will help and just to let them know if it got worse. Two months after I started taking the supplements it seemed that I could tell the difference and numbness felt a little above the ankles instead of just below the knees. Then this past year I've been having some feeling return to the bottom of my feet. They still feel numb but at times they seem more normal. I haven't bothered with any additional testing so it really is subjective on my part. I also make it a point to keep my rub my feet and legs with a moisturizer daily at night which I think helps since the peripheral nerves are close to the skin.
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3 ReactionsJohn - what kind of lotion do you like for your feet at night?
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1 ReactionOne of my favorites is LifeFlo Magnesium Lotion - https://www.amazon.com/Magnesium-Unscented-Relaxation-Overworked-Zechstein/dp/B09PVMTM9W, but I also like most of the ones for dry skin like CeraVe, Eucerin, Aveeno, and Lubriderm.
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2 ReactionsI have not had a diagnosis of PN but with all my other Autoimmune joiners, it seems likely. My PCP agrees. I have had neurological studies on my degree of numbness. I do not know about the supplements or any other thing I might do to lessen my numbness and therefore have less impact on my balance. Should I be diagnosed? It is very hard to find a neurologist. The last one able to see me diagnosed me with Charco Marie Tooth Disease which other doctors did not agree with. I am 74 have Medicare and AARP and the ability to supplement the payments. Am I able to get an appointment at Mayo? Any other suggestions?
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1 Reaction@kwfinnie - Should I be diagnosed by seeing a neurologist is a tough question for me and one I think you have to make for yourself based on your other symptoms and how the numbness is progressing. I put it off for over 20 years because I just had the numbness which was in the toes. It gradually progressed to the rest of the foot and then started up the legs to just below the knee. I discussed the numbness with my Mayo primary care doctor at the beginning of the symptoms in the toes and was told they can do some tests to determine if I have nerve damage. My next logical to me question for the doc was if it is nerve damage what is the treatment - no answer then and when I finally decided I needed a diagnosis I got the referral to a neurologist. Then was totally bummed out after being diagnosed with idiopathic small fiber peripheral neuropathy and was told the same thing by the neurologist - there is no treatment for numbness. Fast forward to 2016 and looking for support and information I found Mayo Clinic Connect which got me started doing my own research and learning as much as I can about my neuropathy.
I guess if I was in your shoes I would still want to know for sure about what is causing the neuropathy and if there are any treatments that might help. My suggestion would be to learn as much as you can about your symptoms so that hopefully you will find a treatment that helps reduce or eliminate the symptoms. My two favorite learning sites:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
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4 ReactionsI went down the same path and the answer I got was they need to do a nerve biopsy to discern the "reason" for the neuropathy. I already knew that mine was from trauma from air bags. I was bummed after going through the testing and she said "you have peripheral neuropathy" ... well no s***! If they do a biopsy, those nerves in that area will NEVER renew. No thanks.
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1 ReactionHello John, and thank you for the welcome. I've not posted for several days, being too busy feeling sorry for myself....yeah, some days are like that....I was thinking I should move my answer to the "member journey" discussion, but it's really so short I'll just post it here, and you can move it if you think that would be better. Basically, what I have is radiculopathy in the lumber spine. Yes, I am following the Spine Health group, but recently I've been doing some reading about Peripheral Neuropathy, to see if any ideas might be applicable to my condition, which is mainly "numbness, but no pain." When I found this particular topic in the Neuropathy group I was immediately interested in reading what you all had to say. I'm particularly intrigued by the idea of various supplements to improve nerve health, but right now I can't determine if they would help in my case....so still reading.....
Let's see, what else? Well, I was diagnosed in 2019 with "moderate to severe stenosis." Went immediately to PT and the symptoms stabilized after 3 months to just mild numbness in the right foot and ankle. Figured I could live with that for the rest of my life, doing the PT exercises at home; would be content if it never got worse. But eventually it did, starting this past January. Numbness increasing in the right leg, and now has started in the left. Back to PT. Occasional use of ibuprofen + acetaminophen eases the worst symptoms, but I know I can't keep taking them for the long term. So really don't know where I'm going next, what I'm doing next. I'm 75 (and yes, my name is Pat) and just trying to hold it together for these last 20 years of my life.
Lifestyle changes? We've always eaten healthful food (I cook all our meals "from scratch"; we're active; and we get 8 hrs sleep every night. Such changes as have occurred are all owing to increasing age ("slowing down") and to these miserable symptoms from the radiculopathy. So there we are.
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1 ReactionThank you for your comments. I very much appreciated your discussion of what have endured. I do want a response from neurologist but I have yet to find one who is accepting new patients and who knows a lot about PN and myelin sheath regeneration. Are folks who work on the question of regeneration? With all the press about stem Cells I would have thought we would see some press for applying it with myelin sheath regeneration. Best Wishes. K
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1 ReactionHi @kwfinnie, Stem cell therapy was always my big hope when I first started searching for something for my neuropathy numbness. It's also really why I continue to take a lot of supplements to provide what is needed at a cellular level to hopefully help the nerve regeneration. Here is a discussion along with a few other links you might find helpful:
-- Does Stem Cell Therapy work for Neuropathy?: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
-- Patient Handbook on Stem Cell Therapies: https://www.closerlookatstemcells.org/patient-resources/#handbook
-- Nine Things To Know About Stem Cell Treatments: https://www.closerlookatstemcells.org/stem-cells-medicine/nine-things-to-know-about-stem-cell-treatments/
-- Stem Cell Treatments: What to Ask: https://www.closerlookatstemcells.org/stem-cells-medicine/stem-cell-treatments-what-to-ask/
Interested in your journey
I too have numbness in fingers and feet from mod-severe cervical stenosis .
No pain . For the most part I function well . Going to PT for some shoulder issues but have never had PT for neuropathy . What does PT do for your neuropathy .
Thanks
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