This is the $64,000 question. . .WHY NO MED FOR NEUROPATHY?

Posted by highdesertdweller @highdesertdweller, Sep 6 1:07pm

YES, Capitalized as others have asked this, trumpeted this question before. With: all the money out there, the blockbuster drug potential, Big Pharma money, et al. how can a drug not have been produced that blocks the pain, electrical charge and current, pins/needles effect of neuropathic pain and discomfort?? Something that targets this type of pain and nerve pathway. It's just INCONCEIVABLE. . . . No aspirin, no Advil, no prescription med except off- label Lyrica, Gabapentin, anti-depressants, etc.

SO, DOES ANYONE KNOW OF ANY MEDICATION IN THE OFFING, NEAR FUTURE??? Is anyone or anyplace working on this??? If for the massive amount of money to be made if nothing else? Do I ask too much?!

Interested in more discussions like this? Go to the Neuropathy Support Group.

megidigo | @megidigo | Sep 27 7:30pm

In reply to @artemis1886 "@gnocchi alpha lipoic acid has been used by IV by Germany since the early 1951. ...." + (show)

@artemis1886
You can get alpha lipoic acid by IV in some cities in Canada. Its not provided by medical practitioners but by naturopaths and other holistic places so makes me wander about it.
https://torontofunctionalmedicine.com/the-iv-lounge/alpha-lipoic-acid-info-sheet/
With that said if I had known about this before I would have tried it but it Im no longer living in a place where its offered. With that said you would think there would be reports about it.

I guess you could travel to try it. You dont need a prescription for naturopaths or holistic practioners. I believe they just take your money…

insanepain | @insanepain | Sep 27 7:39pm

Big Pharma doesn't want cures, there is no profit in cures. But that is just my opinion.

megidigo | @megidigo | Sep 28 5:13am

In reply to @insanepain "Big Pharma doesn't want cures, there is no profit in cures. But that is just my..." + (show)

@insanepain

Actually a cure would be nice but all I want is some kind of treatment or medication that actually treats the disease so I can resume life but there isnt any so what is Big Pharma hidng? They surely arent making any money by not providing an actual treatment cause there is no real treatment for neuropathy

insanepain | @insanepain | Sep 28 7:09am

In reply to @megidigo "@insanepain Actually a cure would be nice but all I want is some kind of treatment..." + (show)

@megidigo Very true, a cure would be nice, but we all just want a treatment that works (for the most part), so we can all resume a 'somewhat' normal life. There are other medications and treatments in Europe and other parts of the world that are not available here, becuase of Big Pharma and the FDA. It's all a money game to them and we are all on the losing end of that.

insanepain | @insanepain | Sep 28 9:39am

I keep looking for clinical trials in my area, but all the ones that I am looking for are full and not accepting any new patients. But others can look in their area to see what's available. Go to clinicaltrials.gov, type “peripheral or diabetic neuropathy” in the search bar, and filter by:
Status: “Recruiting” or “Not yet recruiting” (these are the ones accepting new participants)
Location: Your state or city (many trials are site-specific)
Phase: Choose Phase 2 or 3 for the best balance of safety data and potential effectiveness
Age/Sex: Filter to match your demographics

megidigo | @megidigo | Sep 28 10:40am

In reply to @insanepain "I keep looking for clinical trials in my area, but all the ones that I am..." + (show)

@insanepain
Looking back the most honest thing a medical practitioner has told me about this condition when I asked “what can I do” was the following “Find an join a research trial.” Sadly that was also when I knew I was truly ****ed. Well and the fact he left the room for a good few minutes before coming back to and point blank said “there is nothing we can do.” My response was the question above. I had never heard of this and was expecting to receive a prescription of some kind and get back to things. I do wish I was given better info about what I have though as I would have done things a bit different when this first started and I might have fared a bit better.

The problem for me is it seems all the trials are focused on pain and I dont really have that. My body is breaking down, weird uncomfortable feelings and more (unfortunately)!

Ironically the trial that I would have been most interested in was completed a couple of years before I was diagnosed and it was in the city I was living in. I do wander “seriously? Like what the hell?”

insanepain | @insanepain | Sep 28 12:15pm

In reply to @megidigo "@insanepain Looking back the most honest thing a medical practitioner has told me about this condition..." + (show)

@megidigo I know, I try not to get frustrated or upset when a doctor says "you may have to learn to live with it", when you want to say back.. "dude really"? or when you see a clinical trial that fits you PERFECTLY, but it just filled, liked yesterday filled, and you feel like Agent 86 saying "missed it by that much", while holding your index finger and thumb an inch apart., for all those that remember the 60's show Get Smart. I almost want to look for the camera pointing at me and make a frustrated face like the Skipper did when Gilligan did something stupid. Okay, I'm dating myself. lol I try to keep myself laughing, even when I'm in pain.

phyllisq | @phyllisq | Sep 29 9:54am

In reply to @megidigo "@insanepain Looking back the most honest thing a medical practitioner has told me about this condition..." + (show)

@megidigo
I also have neuropathy without pain, just numbness and instability. Life as I knew it has been over for years. I am now for all practical purposes, homebound. I try to hold down the negative feelings but this means constantly saying to myself ‘don’t think about it.’
I was recently diagnosed with gout after a flare in my hand that sent me to the hospital. It was wonderful because gout can be treated so there is hope that things will improve.
Is there any advantage to seeking treatment for neuropathy at the Mayo clinic?

megidigo | @megidigo | Sep 29 3:04pm

In reply to @phyllisq "@megidigo I also have neuropathy without pain, just numbness and instability. Life as I knew it..." + (show)

@phyllisq

I wander if there is but probably not unless its autoimmune. Do you go to Mayo clinic?

phyllisq | @phyllisq | Sep 29 7:30pm

In reply to @megidigo "@phyllisq I wander if there is but probably not unless its autoimmune. Do you go to..." + (show)

@megidigo I have not been to Mayo Clinic but have considered trying to get an appointment in Jacksonville since I have the opportunity to live down there from time to time. I’ve been referred to so many specialists in the past few years with no improvement. I don’t want to waste the time again.