Neuropathy: Numbness only, no pain

Posted by John, Volunteer Mentor @johnbishop, Sep 10, 2020

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

@sunnyflower

Hello Flamingo and @avmcbellar and @johnbishop, this is probably a dumb question but can the prisms be removed from the glasses lenses or are they permanent? I have diplopia off and on throughout the day as well as some other vision disturbances like if I'm reading a sentence, that sentence can appear below that sentence although a little lighter. Then I also have the traditional double vision. So, another question, when I am not having those two vision problems, will the prisms in the glasses lenses affect my vision regular at all? If not then it wouldn't matter if they are in the glass lenses permanently or not. BTW, these would be in my prescription glasses that I am asking about. Thank you so much, Sunny flower

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@sunnyflower, As my best teacher used to tell me, there's no such thing as a dumb question, a dumb question is a question that goes unanswered because it wasn't asked 🙂 That said, unfortunately I have no experience to share with prisms. It would be a great question to ask your ophthalmologist.

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@user_che214927 good morning Barry down under! Thank you. For me, after my AVM, it has not been difficult to form new brain connections. The new connections I felt(more occurrences at the beginning of my AVM) were all on one side of my brain. Just recently, last week, I began feeling new connections on the other side of my brain. Simple tasks that are taken for granted are now doable for me. Little by little I am improving on my physical abilities. I am hoping to eventually decrease the motion sickness related to my diplopia. In doing so, I will be able to do even more things. I feel because I had always stuck to a workout routine before my AVM, it has helped me maintain my strength for recovery. In fact while in the ICU I felt bad when the medical staff asked me to squeeze their hands or push with my feet( I tried not to hurt them). Since my AVM I have exercised with pushups, planks,sit-ups,etc at home but I do not feel the soreness of my muscles as I once did.
The time factor I believe is different for everyone due to their specific ailment. A friend of mine had told me she was performing eye exercises through a vision therapists in Pennsylvania for her diplopia. She had insisted for me to do the same here in Tampa. Within 6 months she did not need a prism because her diplopia was gone. That is when I started with my research and began neuroplasticity. She never mentioned neuroplasticity. I don’t know if it was unbeknownst to her but I figured that is what she was practicing.
I agree. Keep on attempting the neuroplasticity. The time will pass regardless so why not do something positive for yourself to enjoy life during that time. Beats doing nothing and being miserable 😩. For me I will practice neuroplasticity until January 2022 when I will have better medical insurance coverage. Lol, January seems to be a greater month!🤓 I believe in surgery as a last resort. It will be better for me to try neuroplasticity since I have nothing to lose. Thank you for your time and information. Best wishes to you Barry! What is next after the sticks? Pretty soon you will be outdoors doing the Aussie salute, lol! Toni

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@sunnyflower

Hello Flamingo and @avmcbellar and @johnbishop, this is probably a dumb question but can the prisms be removed from the glasses lenses or are they permanent? I have diplopia off and on throughout the day as well as some other vision disturbances like if I'm reading a sentence, that sentence can appear below that sentence although a little lighter. Then I also have the traditional double vision. So, another question, when I am not having those two vision problems, will the prisms in the glasses lenses affect my vision regular at all? If not then it wouldn't matter if they are in the glass lenses permanently or not. BTW, these would be in my prescription glasses that I am asking about. Thank you so much, Sunny flower

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Hi @sunnyflower, Good question. First of all, I agree with @johnbishop. You should see an ophthalmologist to determine the cause of your diplopia. Once the cause is known a solution will be easier to develop. No guesswork for you. A prism is put in a pair of glasses but those glasses can get very costly. Be aware a prism is not always the answer for finding relief. It all depends on the torsion of the eyes. With the aid of medical tools an ophthalmologist will be able to determine if a prism will help. I went through a total of 8 different prisms and found not one helpful. He later did a test with my eyes and found no prism would offer help. If you get the diplopia on and off a prescription pair of glasses may not be the answer for you. Let the ophthalmologist do an assessment to help you. I hope this information answered your question(s). Toni

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@avmcbellar

Thank you Flamingo @afirefly. I appreciate the feedback. Unfortunately my diplopia was caused by nerve damage related to my AVM(ArteroVenousMalformation). Prisms do not offer help because of the torsion with my eyes. I checked with a neuro ophthalmologist. I may consider strabismus surgery for the eye alignment correction. The surgical adjustment is very small. I run the risk of an over adjustment. In that scenario, the prism will help. So in the meantime I am trying the neuroplasticity on my own. I have looked into the possibility of eye exercises at a doctor’s office. Not only is it costly but very inconvenient to visit the office each time. You would think with vision problems an alternate method would make more sense. I had recommended virtual visits using computer software for the eye exercises. The office is not accommodating at all. Who needs that inconvenience? Oh well, good luck to that business! I had a friend in PA who benefited from eye exercises. It eventually eliminated her diplopia completely. She no longer needed a prism in her glasses! Thank you for your suggestion. My lack of balance stems from the nerve damage created by the AVM. The neuropathy resulted from the last surgery to correct my AVM. I had A total of 3 surgeries. My AVM involved the junction of 5 blood vessels in my brain, namely the cerebellum. It is the same part of the brain affected when one drinks. That is where the lack of coordination or balance comes in. Thanks again, Toni

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Toni, it would be interesting if your book on neuroplasticity discusses the plasticity of the cerebellum. In any case, the "Better Balance" book discusses the body's different balance system. Theoretically, if one balance system, such as the cerebellum, is partially compromised, one or more of the other balance systems may be recruited to partially pick up some of the slack.

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@sunnyflower

Hi @johnbishop and fiesey76, yes, how we choose to deal with these traumatic issues is everything. It has also been my experience, that we don't necessarily get over them rather we get through them. This story in particular is heartbreaking. I lost my mom when I was 10, unexpectedly, and there were six of us little kids. But to lose both parents at a young age, wow, that's pretty heavy-duty! Take great care of yourself and warmest regards, Sunny flower

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@sunnyflower

I doubt very much that prisms ground into a lens could be removed. One inexpensive option is to have your ophthalmologist put a prism sticker on the lens. It's not a permanent solution, but it's something that could be done to see if a ground in prism would be the answer. Another possibility is having 2 pairs of glasses.

I have a prism ground into the right lens, but after a month or two, the double vision became worse than ever. When I switch to my sunglasses, that don't have a prism, it takes a few minutes for my eyes to adjust. If I'm only going to want sunglasses for a short time, I use clipons. A prism can't be ground in a sunglass lens, I believe. My vision is noticeably worse when my eyes are tired, especially for reading.

For the month that the prism worked, it was really nice. @avmcbellar – Toni has given me good information about treating diplopia, some of which I'll pursue if/when it gets bad enough.

As if we didn't already have enough things to deal with! Right?

Jim

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@avmcbellar

@fiesty76 I have a friend who had neuropathy(don’t know which type). After trying compression socks, her neuropathy went away. It never came back. I was unsuccessful in my attempt. You won’t know until you try it so give it a shot. It may work for you. Toni

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Good suggestion, @avmcbellar. Nothing lost if giving the compression socks a try and if they help, it would be a great aid. Thank you!

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@jimhd

@sunnyflower

I doubt very much that prisms ground into a lens could be removed. One inexpensive option is to have your ophthalmologist put a prism sticker on the lens. It's not a permanent solution, but it's something that could be done to see if a ground in prism would be the answer. Another possibility is having 2 pairs of glasses.

I have a prism ground into the right lens, but after a month or two, the double vision became worse than ever. When I switch to my sunglasses, that don't have a prism, it takes a few minutes for my eyes to adjust. If I'm only going to want sunglasses for a short time, I use clipons. A prism can't be ground in a sunglass lens, I believe. My vision is noticeably worse when my eyes are tired, especially for reading.

For the month that the prism worked, it was really nice. @avmcbellar – Toni has given me good information about treating diplopia, some of which I'll pursue if/when it gets bad enough.

As if we didn't already have enough things to deal with! Right?

Jim

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@johnbishop @avmcbellar @jesfactsmon Hi Jim, Toni, John and Hank, wow, they can put a prism sticker on the lens! That's very interesting and cool! I hadn't heard of prisms in the lenses so had no idea how they work. I will keep your great info in mind! Hope you all are acutely aware of the many blessings surrounding us today and having ZERO pain!! Fondly, Sunnyflower

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@sunnyflower

@johnbishop @avmcbellar @jesfactsmon Hi Jim, Toni, John and Hank, wow, they can put a prism sticker on the lens! That's very interesting and cool! I hadn't heard of prisms in the lenses so had no idea how they work. I will keep your great info in mind! Hope you all are acutely aware of the many blessings surrounding us today and having ZERO pain!! Fondly, Sunnyflower

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@sunnyflower
No Pain!!! Wha????? YOU ARE TOO COOL FOR SCHOOL GIRL!!!

Very deleriously happy for your no-pain day, Sunny. No one deserve it more!

Best! Hank

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@sunnyflower

@johnbishop @avmcbellar @jesfactsmon Hi Jim, Toni, John and Hank, wow, they can put a prism sticker on the lens! That's very interesting and cool! I hadn't heard of prisms in the lenses so had no idea how they work. I will keep your great info in mind! Hope you all are acutely aware of the many blessings surrounding us today and having ZERO pain!! Fondly, Sunnyflower

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@sunnyflower. ZERO pain? Wow. Congrats!!

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@jesfactsmon

@sunnyflower
No Pain!!! Wha????? YOU ARE TOO COOL FOR SCHOOL GIRL!!!

Very deleriously happy for your no-pain day, Sunny. No one deserve it more!

Best! Hank

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Hank, I wish! Somehow you grossly misunderstood me LOL! Often I will sign off saying that I wish zero pain for someone. @johnbishop @avmcbellar.@jimhd Take care!

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@sunnyflower

Hank, I wish! Somehow you grossly misunderstood me LOL! Often I will sign off saying that I wish zero pain for someone. @johnbishop @avmcbellar.@jimhd Take care!

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@sunnyflower

Hank, I wish! Somehow you grossly misunderstood me LOL! Often I will sign off saying that I wish zero pain for someone. @johnbishop @avmcbellar.@jimhd Take care!

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@sunnyflower NOT no pain? Well that sucks, my dear Sunny! 😒 I'll try to calm down, I was WAY excited. Bummer.

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