Living with Neuropathy - Welcome to the group

I am hoping to get some useful suggestions for my peripheral neuropathy. I will describe it and its history. I request that you relate to my case rather than yours and that you share the source of your knowledge. Thank you for your time.

I have no pain or tingling, just a quasi-numbness similar to what you might feel if an arm or leg “went to sleep.”

In 2016 I had an left ankle fracture treated by surgery, and a second surgery to clear up an infection from the first, (and remove the hardware). I began noticing some stiffness around the ankle and nearby leg. Gabapentin did not help.

About 3 months after the fracture, one night I reached my left are far above my head to get something. For about 30 seconds my entire left arm was numb. This quickly dissipated, but some numbness (I always mean quasi-numbness when I say numbness.) in the 3rd and 4th finger tips stayed. I am a classical pianist so that obviously concerns me. A tad of numbness began in the other left finger tips, though much less. The numbness in the 3rd and 4th tips has moved partly down the fingers, though also much weaker. My piano playing has not at all been affected by any of the above (except for some recent ankle/foot discomfort after much pedaling).

I saw a top neurologist at Weill-Cornell, a hand specialist, and others who all said it would heal and not to go for complex tests. To date no doctor has ever mentioned or suggested a neurological disease.

Later on the ball of my left foot began to feel puffy. Many months later, with no cause, the ball of my right foot began to feel puffy. As of now the left lower leg has stiffness on the sides and the right lower leg also to about half way up. The bottom of both feet feels harder just above the puffiness. I can walk several miles.

In 2019 I had an Emg at Weill Cornell. Nothing of consequence beyond peripheral neuropathy.

In 2020 I saw the hear of NYU Langone neurology and we did and Emg and nerve conduction study test which showed only some slow nerve conduction in one or two places. I also had and MRI cervical spine wo contrast neuro. All tests nothing of consequence beyond peripheral neuropathy. I tried about 6 peripheral neuropathy medicines over time (nortriptyline, pregabalin, carbamazepine, oxcarbamzepine amtriptyline) all with no effect. Earlier I tried several weeks of acupuncture and several weeks of physical therapy with no effect. I have been using 80 – 110 mg daily of broad spectrum hemp CBD since the beginning of 2022 and have added 1 -2 mg of THC for the last months to help with an entourage effect. No improvement. Based on a dispensary pharmacist’s recommendation my next step will likely be 50% CBG with 50% CBD and minimal THC.

I realize how very fortunate I am compared to many others. I thank you for your interest and wish you good health.

@rhm601, Like you I also feel very fortunate that I don't have associated pain with my neuropathy. My Mayo neurologist diagnosed me with idiopathic small fiber neuropathy and offered no treatments for the associated numbness that I have. When I asked him, I was told the same thing my primary care doctors have told me for over 20 years of complaining about numbness in the feet and progressing up my legs. My primary care doc gave me gabapentin prior to seeing the neurologist to see if it would help. I stopped taking it after about 2 weeks because it wasn't helping. Then in a discussion with my Mayo care team I learned that neuropathy pain meds are generally seizure type medications designed to make the brain ignore the pain (my non medical translation of what the doctor told me).

I have been taking supplements since 2016 that have helped slow and possible have stopped the progression but it's subjective on my part as I have no interest in having more nerve conduction studies or skin punch biopsy tests done to see if it's gotten better. The first time I started looking into supplements was when I saw a list on the Foundation for Peripheral Neuropathy (page 5 & 6 of the document) -- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. I also used Google Scholar (https://scholar.google.com/) and PubMed (https://pubmed.ncbi.nlm.nih.gov/) when searching for information on studies about supplements that help with neuropathy.

I also have stayed away from CBD/THC products because like medications they are addressing pain and I haven't seen or heard (or I missed it) anyone saying they have helped with numbness.

@retired123 discussed a product called EB-N6 in a post in another discussion that may be something to investigate. Here is the post in the discussion - Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/comment/692162/

Has your neurologist or doctor mentioned any possible causes for your neuropathy diagnosis or do they say it's idiopathic like mine?

Hello @logman1 and welcome to Mayo Clinic Connect. I am sorry to hear about this sudden onset of symptoms you've shared.

I did want to let you know that I have moved your post into an existing discussion on living with neuropathy so that you may more easily connect with other members.

In order to get you where you are needing support most, it sounds as though your doctor told you the numbness was neuropathy or neuropathy related, however, you also mentioned your A1C score. Are you concerned about a potential diabetes diagnosis as well?

How are you doing now that you are on Metformin?

In 3 months I have went from a 12 to 7.8. Im still experiencing numb feeling and balance problems. I have to use a walker. Legs real weak. Im taking metformin 3 a day. Has anyone else had something like this?

I am new to this group and was very glad to find it. I haven't been able to talk to anyone that has anything remotely resembling what I have.
I do not seem to have any kind of neuropathy that fits the description of what I have read about. I do not have diabetes, and I do not have burning or numbness in my feet or hands. My neuropathic pain started about 10 weeks ago. At first I just itched all over and noticed that my skin was very sensitive to fabrics of any kind. My skin was suddenly irritated by all of my clothing, and even the soft sheets on my bed. The itching quickly progressed to pain that is sometimes like ants biting you, stabbing pains, pinching pains (as if someone just pinched you very hard), is worse after taking a shower, and is always worse at night. I put lotion on all over my body about 3-4 times a day, as that seems to help temporarily. Keeping my bedroom very cool at night is a must. I have to let the AC run long enough to cool down the sheets before I can stand for them to touch my skin. I have seen a neurologist who did blood tests which didn't show any dramatic results. It showed I have a very low monoclonal protein level for which the neurologist referred me to a hematologist. It in no way indicates that I have Multiple Myeloma, thankfully. It's low enough as to indicate that I might have some complications that can cause something akin to diabetic neuropathy, but nothing else. I am scheduled for a Nerve Conduction Study on Sept 1. My primary care physician had started me on a low dose of gabapentin, which the neurologist raised to 300 mg 3 times a day. I have been on that dosage for a little over a week and it hasn't helped yet, although I keep reading that it takes time for it to build up in your body. I hope it doesn't take too much more time. The neurologist sent a referral to the hematologist and am waiting for them to call to set up an appt. I don't really think he will be able to shed much light on this, but since it was suggested I seem one I am willing to go. I can't discuss any of this with my PCP as he has been out of the office for a week and will be gone all of this next week. My appt with him is not until Sept 2.
So that is my story thus far. Has anyone experienced the same sort of neuropathic pain as what I have described?
Thanks for listening. God bless all of you. Many of the stories I've read on this forum indicate that you are stronger and braver than I am and many with worse symptoms and pain than I have.

Hello @maggie1960, Welcome to Connect. Hopefully your nerve conduction study on Sept 1st will help provide more information on the way to a specific diagnosis. Learning as much as you can about your condition will help you better advocate for your health and hopefully find a treatment that works for you. It sounds like you have that mind set already which is a great start. Here are a couple of websites you might want to bookmark for learning more about neuropathy:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You also might find the following discussions helpful:
-- Neuropathy 101 - Knowledge is power?: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned having a very low monoclonal protein level but the doctor said it doesn't signify Multiple Myeloma which is great. Does your doctor think there may be a connection with neuropathy and a low monoclonal protein level?

Thanks, John, for the suggestions on the websites and groups. I'll definitely look at them.
My doctor, which at this point would be the neurologist, doesn't really answer questions, so I don't know what she thinks about a connection between neuropathy and the low M Protein level. All she did was make a note on the lab report that she would refer me to a hematologist. I had to do my own research, as most of us do, to even find out what the M Protein level meant. Hopefully, I will be seeing the hematologist this coming week. I don't know that he will be able to shed any light on it but I have to at least go and ask questions.
Thanks so much for your welcoming and encourging words!

If there is one thing that I have learned is keep asking questions of your doctor. I think they like to help if they have the answers. Don't want to overload you but there is a site I really like because I had the opportunity to meet the doctor, Victor Montori, that cofounded the site - The Patient Revolution. He has some great tools for preparing questions for an upcoming appointment -- https://www.patientrevolution.org/tools