Idiopathic Progressive Polyneuropathy: How to find a specialist?

@jesfactsmon Hi Hank, Thank God MS has been a non issue for you!!! It can be a brutal disease. My girlfriend has it, and it is a non issue for her as well. My mom in law had it, and it was a bit more than a non issue, but not too bad. However, I do know a few people in wheel chairs and pain from it. I am so glad you are ok. It freaked me out when I read you have it. Thanks for getting back here to help my fears!!! Lori Renee

Hi Lori, yes, I know it can be bad. The worst thing about it for me was not knowing how bad it would be for me. After the first couple of years I started to feel sort of less worried. Then I read a book by the author Michael Crichton who also had MS. He said a doctor friend of his told him that as a rule of thumb it was generally considered that if you did not have any symptoms for 5 years you were pretty much out of the woods. I think it was right around 5 years that I was crossing a driveway at work and a car was coming and I started to try to jog and found my legs did not want to jog. I quickly figured out that this was an MS exacerbation, the first I'd had since '99. It lasted just a week or so. But overall I have had an easy go. Thanks a lot for you concern. Hope you are having a good Sunday. Anything new on the DRG front in terms of how it's performing? Hope it's good news or at least not bad news. 🤞 Best, Hank

Hi @lorirenee1, Thank you for reaching out. I was using my experience to help another member who was facing a cancer diagnosis. So it was sorta, kinda camouflaged. I have had one tumor removed on my sternum. I know nothing about cancer. I will go back In November when all is healed to check out another one that looks like a twin to the one that was removed. That's the not so good news about squamous cell.....they spread to other areas....metastasize. Basil cells just get larger in the same place. I am learning and am touched by your care and concern.

Be safe, free, and protected from inner and outer harm.
Chris

@artscaping I'm popping in here Chris to send you my warmest, most positive wishes for a strong, healthy outcome with the dreadful C word. Wish it would just go away from this earth already!

My best to you,
Rachel

@jesfactsmon Hank, I am just so happy to know that your MS symptoms are staying at bay. Crazy how disease works! So it sounds like you passed the time in which MS would have caused havoc. Thank God. As far as my DRG, there is no improvement at all. I get about 20% relief, and if it weren't for Kratom, I would go nuts. Pain Doc appointment next week with the ABBOTT rep, to adjust the electricity. It probably will just curl my hair. But I still hope it works. Ya never know. Love to you and Linda, Lori

@artscaping Hi Chris, I hope that the one you had removed is healing nicely, and that you remove the other one without problem. I am sure you will have to check your skin, all over the place, to make sure new ones do not develop. I had a thought. Could your severe itching have anything to do with the Squamous cells? I do know that cancer can cause itch. Regardless, I wish you the very best. This life of ours can change on a dime. Feel as well as you can. Hang in, and prayers your way. Love, Lori Renee

I was diagnosed with idiopathic small fiber neuropathy at age 64 about 3 years ago. Took gabapentin up to 1,800 mg daily and Cymbalta 60 mg QD, with no real results. I am on 300mg daily of gaba and 60mg of Cymbalta and nothing else. Lyrica was useless. The pain is a burning pain in my feet, with the bottom of my feet turning dark purple (blood accumulation) upon sitting or standing a long time. You can massage the bottom of my feet, and a normal color will return. I have had negative nerve conduction/EMG studies done, a positive skin biopsy, moderate lumbar stenosis at L-3/4, a negative ankle/brachial 1 index study, in depth bloodwork, and nothing really shows up. I have no weakness and no problem sleeping. The purple color on the bottom of my feet is the most puzzling feature. I have no other medical conditions other than mild hypertension. Other than the neuropathy, I am in excellent health.

I was in the medical field as a pharmaceutical sales rep for 40 years, so I have been around physicians daily for most of my life. This is one illness that will cause physicians to throw up their hands and give up on. There is no real effective medication out there, with the anti-convulsants and anti-depressants being the main therapy. I believe the last medication to be approved for neuropathy was Lyrica. This is appears to be one area that is woefully lacking in research. This is extra frustrating to neuropathy sufferers. The market though, is huge.

I want to go to the Mayo Clinic in Rochester, as my final resort, to see what they can come up with. I am very interested in neurostimulation at the dorsal root ganglion to see if it can offer me some help. I recently retired and was looking forward to traveling with my wife, and enjoying life. Now, walking is such a misery. I am not one to give up on finding help, by if I strike out at The Mayo Clinic, I am done. I will resign myself to living with the pain and burning.

If anyone has tried neurostimulation for their neuropathy. I would love to hear your story. Good luck to everyone.
Albert Martin

@lorirenee, thank you so very much Lori Renee. I had never thought about the itching being related to the cancer stuff. What I noticed is that when we had guests and I had to worry about meals.....the itch came rushing back. I think it is stress-related. The itch went away when they left even though it was just lovely to have them here. So much for support for my domestic duties. If the truth be known, I dislike planning, shopping, and cookin meals except for breakfast. Fortunately, my guest loved cooking so she did all the rest. We'll see how this week goes. I also tore my meniscus again doing a simple yoga stretch. Today.....it just must feel better.

May you have love and laughter today.
Chris

@rwinney, Oh....you can pop in "here" anytime. I appreciate your concern and attention to my new medical "stuff". Thanks Rachel.....keep yourself healthy and free of worry.

Chris

@magnum52 Hi Albert. Nice to hear from you. I am sorry for your troubles with neuropathy. I share in your misery. Our neuropathies are slightly different as mine is Polyneuropathy but we do share PURPLE FEET! You are the first I've heard speak of this. I don't feel as alone with my purple monster feet now. 🙂 Isn't the whole thing awful. You are so correct in how you describe our neuropathy path. After my trip to Mayo, I will resign as well to living what I have. But, will keep hope alive for future medical progress! All my best to you in your journey.
Rachel