Living with Neuropathy - Welcome to the group

Hi. I’m pamelaz. I have horrible neuropathy and would love any suggestions. The pain is unbearable.

I’m on 60 mgs of Cymbalta and 100 mgs of Gabapentin throughout the day. I’m having involuntarily jerking and walking wobbly.

I Also have GERD and epilepsy. Take 1000 mgs of Keppra and 1 mg of clonazepam 2 times a day. Everything seems worse. Will it get better?

Dear Colleen and John,

Glad you're there.

I set up an account and was hoping to post about a one page description of my 'unique' case so people could see and give useful suggestions. (No discussion group I could find semed relevant). I just don't know how to post on the site. I don't see a tab for posting. Can you tell me the exact 'actions' to take. Thanks.

Best wishes,
@rhm601

Hi @rhm601, Welcome to Connect. I see that you already posted in this discussion - Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/. That's a great start. You can find all of the step by step instructions in the Help Center which you can access from any Connect page by scrolling to the bottom and clicking the link in the leftmost footer column. Here's the direct link to the Help Center:

If you are wanting to share your journey with neuropathy, you may want to post it in the following discussion here -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Have you been diagnosed with neuropathy?

Thanks for your speedy reply!
I checked out the help center and still can't find out how to post.
I'm not so interested in sharing my story as I am having it seen by people who can make good suggestions.

ps I have been diagnosed with peripheral neuropathy

@rhm601 - It looks like you used your phone or mobile device to reply directly to the email notification. When you do that it puts a bunch of coding at the bottom of your post. To respond to an email notification, just click the VIEW & REPLY button at the bottom of the email, which will take you to my reply. FYI... We removed the extra characters at the bottom of your reply.

To reply to this message after you click the VIEW & REPLY button in the email, click the REPLY button under my post. To write a new post directed at all members following the discussion, scroll to the bottom and type your message in the Comment box and then click the POST COMMENT button.

Each of the different tasks are in the HELP Center under How to use Mayo Clinic Connect, including How to Start a New Discussion if you can't find one for your topic by searching.

In mid April I had been walking ,about 2 miles as I had done everyday for 4 months. Came home ,took shoes off and feet felt numb. 2 weeks later started losing balance. My A1C was 12. Doctor prescribed metformin and said it was neuropathy. Numbness started moving up.. Had 2 mri and EMG. Help

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?

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?

thanks!

I contacted @retired123

I think my neuropathy is idiopathic beyond the history I gave.