Hopeless and Discouraged, again! Seeking any advice.

Certified acupuncturist. Do your research. It has helped me.

Hello @annregister, I'm sorry you haven't found much relief for the neuropathy pain from the different treatments you have tried. I also have small fiber PN but only with numbness. I shared my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy has a pretty comprehensive list of complementary and alternative treatments that might be helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Have you looked into complementary or alternative treatments?

I was diagnosed with chronic Sensorimotor Axonal Polyneuropathy three years ago at Weill Cornell. My three daughters and I were invited to undergo a Whole Exome Sequencing test because we have a family history of PN going back five (or more) generations. The neurologist at Cornell gave us EMG and needle EMGs and that’s how I was diagnosed with the Sensorimotor Axonal Polyneuropathy. The genetic test came back and I have CMT2 and CMT4B. Daughter 1 has no CMT mutations. Daughter 2 has the CMT2 mutation. Daughter 3 has both the CMT2 and CMT4B mutations. No cure for these suckers. My feet and fingers tingle all day and I have reduced sensation in my toes, feet and fingers. Still driving but I know my driving days will end sooner than later. I tried Gabapentin and Lyrica but turns out I had bad reactions to those pain meds. Good luck.

I concur and completely understand your frustration. After visiting Dr. after Dr. and having tests after tests, no one was able to tell me what was wrong. I went to one neurologist, who said to me, “what are you doing here“ I proceeded to tell him my story, my symptoms, etc., and told him that I had been to Mayo clinic three times and could not be diagnosed. He responded in a nasty tone, “I find that hard to believe.“ Needless to say, I left in tears, and when I got home, I called the office administrator for the practice and told them about the encounter and that I wanted to be transferred to a different neurologist in the practice. Where is the compassion? Where is the understanding? Where is the bedside manner? It was this new neurologist that agreed to do the EMG on me and I was diagnosed that day. There is no excuse for these doctors to treat their patients with such distain and lack of empathy. I feel your pain and anxiety.

I understand the hopelessness we can feel over this sometimes. You said you’ve tried everything. I thought I had too, until I found this forum. We’re not alone and so many different experiences are here to learn from. The mentors and moderators are great, each seeming to have a niche, from research, to medicine, to positive thinking, to physical therapy, to alternative therapies, to footwear and hand wear, to uses of vitamins, lotions, cannabis etc.
I have had so much help from these folks I can’t name all the benefits I’ve gotten from them. But two I’ll mention are:
1) Acupuncture - just 5 sessions were recommended, and that put me in such a positive mindset and a physical & mental relaxation that were much needed. I know I still have a lot of work to keep my mind positive, but that was a big boost. I’ve just started some self meditation, and may occasionally go back for another Acupuncture session.
2) Physical Therapy - yes it can be hard on me, but I do things wrong which further hurt me and add misery. They know things that help me. They get me to stretch the right things, loosen up the right things, and work the muscles I need to actually make life easier and reduce the pain I’d otherwise make worse.
I can’t add pills that make me dopey and more off balance and am so thankful for the ideas people here shared and I tried. I hope you find what can help you - I’m cheering for you to find the best solution !

Someone on here mentioned that some doctors are as frustrated as we are that they can’t give us a diagnosis, find out our cause, or give us a cure. So now I find myself a little more compassionate toward them (unless they’re extremely rude). Twice I have stated to doctors “I’m sure this is frustrating for you too”. Both times they relaxed a little and the conversation became less stressful and more positive. I want my 15 minutes with them to be productive. I hope you get the right balance for help!

Sounds like you are on the same path. How do you make it through the pain day to day. I has just gotten to be too much for me.

My husband was diagnosed with transverse myealitis after a 4 year journey as well as MGUS a blood disorder. Somewhere he was told to take extra vitamin b12 and was told by hematologist his number was too high. It's difficult when you have 2 neurologist a nephrologist a rheumatologist and a PC to get them all on the same page. Does anyone have experience with b12 and if it helped them or not?

This is war. I am a warrior. I must fight now. Playtime is over. I must steel myself to do battle with neuropathy. I might not win the physical war with it, but I can do my best to win the psychological war. I will not roll over and die. I will not go quietly into that Good Night. This thing may be bigger and stronger than I am, but by God I'll get a few licks in, somehow.
Researching...

I’m a Marine veteran so I learned to “suck it up” and just live with the pain. I spent 23 months in Vietnam and I was wounded three times (never figured out how to duck) so I’m familiar with pain. But I have a great support system - my wife and three daughters. The tingling in my feet and hands is annoying and sometimes painful but I just deal with it. I guess I have a high pain threshold. When I can no longer drive it will hit me big time. The loss of independence will hurt emotionally. I hope you learn to deal with the pain. Obviously, some days are worse than others.