Why test for neuropathy if there is no cure?
I was diagnosed a little over 2 years ago by my PCP I do have RA and when I would tell my ruhematologist about the pain in my feet he would just blow it off. So went to my PCP and he listened, looked at my blood work from ruhematologist and said it's neuropathy we thought maybe trigged by the biologic I was on at the time. He started me on Gabapentin and at my next ra appt we stopped that biologic and started a different one. Silly me I assumed this would clear up and go away after that. Fast forward to now things have progressed enough that I use a wheelchair when not at home and am on permenant disability now. I read these posts and a lot of you know a whole bunch about your PN but the one common theme I see is there is no fix. Somethings help some with the pain others are just a distraction but bottom line nothing gets better. So why go thru all tests, trouble and money to identify all the details when they don't help?
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Hi Sunny, I think we all need a medical secretary to take care of all of our health related duties! They could do our research, note taking, shopping, opinion/ advice giving, be a shoulder to cry on, listen to our complaints, etc. Any takers out there? Anyway, I hope you see a positive result if you try it. Please let us know; itching seems to be a not uncommon symptom. Helen
Helen, thank you. I did not know that we could do it that way. That actually sounds easier than what we go through with our health insurance company. Medicare reimburses you for medicines too? Peggy
Peggy, the drug plan is separate, We have Medicare, (not Advantage) supplemental, plus a drug plan. Helen
@helennicola
Wow Helen, you have just recounted my job description. So I guess I am a medical secretary as I do all the things you mention. I have yet to see a paycheck, but I can't complain. The other rewards are quite amazing. Best, Hank
Hank, if you believe in Karma you also have something wonderful to look forward to in your next life! 😄 Helen
Regenerative therapies are moving forward but will still take a number of years for FDA approvals. I am particularly following stem cell regenerative therapeutics developments, with Japan's Government being very supportive of new therapy developments. Our FDA is not moving so fast here given the Covid pandemic, but they are just now approving some regenerative stem cell therapies that are related to Covid. So at least some movement forward for relief maybe for us with PN.
Amen Helen! And we could also use a wife once in a while. Occassionaly, only every day or so LOL!! I can't spell! Take care, Sunnyflower
Ok folks, I have really great news. On 23rd Dec.2020, I woke up in the middle of the night, with both legs, from ankle to top of thigh, and both arms, from wrists to a couple of inches above both elbows, burning like a severe sunburn, with chronic itch on all four limbs. I knew that this was the ultimate challenge to my belief in neuroplasticity .. The rule concerning itch is; NEVER, NEVER, SCRATCH AN ITCH, and that's what I did.. My thinking,was that I really should go to a hospital emergency centre ,but decided to hang in. After four days THE ITCH graduly reduced and was gone totally by 2ND January. The rash was much slower , but is now almost gone. Another, to me, almost a miracle is that the numbness in my feet , ankles and lower leg muscles, has reduced and feeling returning. I am now walking 2 kilometres per morning using 2 walking sticks, with forearm clasps, increasing the distance every Monday morrning by 100 metres.
My daily treatment was and still is, every morning.
1.EXTREMELY HOT SHOWER, USING HAND SPRAY TO EVERY PART OF MY BODY, INCLUDINNG HEAD AND NECK, LEAVING MY BRIGHT RED
2.DRY MY SKIN AND APPLY A BASIC MOISTURISING LOTION.
3. DRINK 2 GLASSES OF COLD WATER AND GO FOR MY WALK.
SUMMARY IS THAT NEUROPLASTICITY DOES WORK AND I EXPECT A TOTAL CURE!
I am now aged 90, and still on nil medication. Over the last month my eyes and optic nerve was examined by a Ortho Ophthalmologist, who found all was well, and that my slightly dry eyes would vanish as I emproved. HE also agreed with the opinion of my Neurologist, both world ranked specialists, who forcast, " Yes, a cure is possible, but it wont be easy"
All that I heard was , YES IT IS POSSIBLE.
I DONT CARE HOW HARD IT IS!
HI John, I looked up that Harvard health thread, but couldn't access it, nor even buy an on line subscription. But I wonder what the article said about "why do I smell odors that aren't real," because I have that problem. The symptoms of my PN include the numbness, pain and burning below the waist and the sense that my hands are constantly falling asleep, dizziness standing up, but also this odd smell that seems to follow me around. I have wondered if that is related to PN.
Hi Barry, MechanicJesus and all, I, too, have found significant help through the practice of meditation, writing, somatic tracking--all those things you can do to help your brain turn down the pain signals it is continually sending. Neuroplasticity is not a quick fix, that's for sure, and may not be able to fix certain things at all, but it has helped me refocus my attention in ways that help me live with the discomfort. I am so sorry that your PN has progressed to the point you describe, mechanicjesus, and I know it must be incredibly difficult to live with that kind of disabling disease. It is wonderful that you have a loving relationship with your spouse, as well as reasons to keep on keeping on! I am praying for research that will yield cures and for meds that really make a difference for all of us, and particularly for you. Yet, I would recommend the books, websites, and therapists who are doing work in the area of chronic pain through neuroplasticity. You don't hear much about it from most docs, but at least for me, it has been a real help!