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Likelihood that the pain will progress or stop?
Neuropathy | Last Active: Feb 12 9:50am | Replies (11)Comment receiving replies
Thank you for responding, dlydailyhope.
I have not had a skin punch, I have had multiple EMG studies done, as well as a billion blood tests & spinal tap. Then I went to a rheumatologist and had a billion more… and I’m as healthy as a person can be, no anomalies or anything out of the green zone.
Never had aches or pains, never was sick, never spent a night in a hospital. I was very active, walking miles at a time, playing sports for hours, just very healthy.
Not diabetic, never drank alcohol, never did drugs until I started on medical marijuana a few years ago.
I’ve had MRI’s and CT scans - no bulges, no compression, no pinched nerves, all was unremarkable.
Official diagnosis according to 4 separate neurologists (including extensive investigation & follow-ups at Mayo & Cleveland clinics) is that it’s Idiopathic Peripheral Polyneuropahy, and no one knows what to do about it.
I’m 6’-4”, and when this started I was 262 pounds, so at the suggestion of my very supportive wife, I lost 40 pounds and cut out a lot of sugar… after two years, the only thing that’s changed is there’s more numbness and pain. Oh, and I had to stop working three years ago at 58 years old because I can’t even sit at a desk chair for more than a half hour.
I’ve tried every salve, balm, ointment, supplement, electric shock gadget and shoe insert. I walk (hobble) with a big walking stick and I spend my days on one of several recliners we have, with a heating blanket on my feet. I could only walk our dog 400 steps today, and I soon won’t even be able to do that.
I’m on Medicare now and am not done looking for ways to relieve the pain, including an upcoming hypnotherapist and an attempt to be seen at Johns Hopkins. PT was way too painful to have any benefit, but I found a place that puts you in a harness to take most of your weight off so you can do balance exercises.
I welcome any and all ideas, and am just trying to somehow mentally prepare myself for the next 20 or 25 years of increasing pain and immobility.
Replies to "Thank you for responding, dlydailyhope. I have not had a skin punch, I have had multiple..."
Have you tried acupuncture? It has helped me tremendously but took about a month to have any effect. I now go every other week and am able to sleep better and function better during the day.
Hi Steve, you didn't answer dlydailyhope's question: "Have you had extensive blood work to determine if you have any deficiency or toxicity of vitamins/minerals?" This is one of my questions.
I have been living with peripheral neuropathy for 14 years. At the time my D3 levels were critically low, around 9. I have it tested each year now and my D levels only stay in the normal range if I take about 7,000iu daily.
I developed sensory and autonomic neuropathies 10 years ago after an episode of Guallain Barre Syndrome, and things have been getting progressively worse. I recently learned about how the deficiency or toxicity of vitamins/minerals can exacerbate neuropathy symptoms and, in some cases, cause it. Deficiencies in B1, B6, B12, and D3 are a part of this picture, as well as the toxicity of too much B6.
I recently discovered I am deficient in a form of vitamin E that can cause PN symptoms and have B6 toxicity. I stopped taking B Complex a few years ago when I learned about B6 toxicity, yet my multivitamin contained it. I stopped the multivitamin in mid-December and started on the correct form of vitamin E, and my symptoms are lessening. Any of these nutritional deficiencies or excesses can cause neuropathy issues. There are probably more, but these are what I am familiar with.
Taking medical grade third-party analyzed supplements is important, as well as knowing exactly what you need. Other supplements that help with neuropathy are NAC, 5-HTP, Co-Q10, R-ALA, magnesium glycinate, to name a few.
I am also wondering if you have removed the foods that aggravate nerves from your diet, mainly gluten, dairy, brown rice, sugar, and caffeine. If I consume any of these, my nervous system suffers, and my symptoms flare up.
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You sound a lot like me: never really sick, never spent a night in the hospital, athletic(tennis, cycling, golf, skiing, etc,). After a ski fall I experienced lower back pain. After a year and a half, I went to a neurologist who prescribed a cocktail of drugs that really helped. A year later I had a spinal cord stimulator implanted. Along with the meds I was almost pain free for about three years. Then the pain came flooding back for no apparent reason(2021). I had the pain pump implanted in 2023. Has neve given me any relief. I'm in the process of turning it down so I can have it removed. I never had any neuropathic pain until about six months ago. Then it began to creep into my feet, ankles, knees, thighs, and arms. EMG "diagnosed" it as Idiopathic Poly Neuropathy. In other words they don't know the cause. My meds barely touch it. Not sure where to go from here. Hope you can find something to help, I am seventy-seven but feeling a hundred. LOL.