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Increasingly Difficult to Accept Peripheral Neuropathy

Neuropathy | Last Active: Aug 10 12:43pm | Replies (233)

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I think the day I got my PN confirmation from neurologist at Mayo Clinic was key for me. She was blunt … “You’ve got PN from your Type 3c diabetes. I’m sorry, there’s nothing that will make it better”. It was harsh, but put me on road to acceptance and being able to steer clear of all the scam advice on social media that says a miraculous cure is NOW available. I believe in the power of the placebo effect, but most of this nonsense just makes me angry …. Duping those most desperate.

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Replies to "I think the day I got my PN confirmation from neurologist at Mayo Clinic was key..."

I have had Idiopathic Small Fiber Neuropathy for almost 10 years. I retired from a major pharmaceutical company and I know how to do research and read and understand clinical trials. My industry has dropped the ball big time in researching neuropathy. The little research that has been done has been focused on pain relief. Very, very little research has been devoted to reversing and healing of neuropathy. It is a huge market in terms of sales potential but pharma companies seem to devote research dollars to eczema, plaque psoriasis, weight loss meds and migraines. I have been to several major medical institutions, including the Mayo Clinic in Rochester, MN. I spent an entire week there a few years ago and underwent an exhaustive round of testing. Every single test, to include bloodwork, came back normal.

There is one company from South Korea called Helixmith that has been researching a drug called Engensis. It is an injection in the calf and has been shown to REVERSE nerve damage from neuropathy! I have made many attempts to contact their U.S. office in California and nobody will take the time to answer my questions. The company has gone dark in terms of any new information coming out about Engensis. This leads me to believe that they have no intention of trying to get the drug submitted to the FDA for review. If they did, it would likely have been submitted last year.

There is a real possibility that no drug with real efficacy will come out for a very long time, if ever. It is extremely depressing. I don’t know what to tell people when they ask me what and when a real drug that will reverse neuropathy will ever come to market.

Neurologists realize that their hands are tied but deep down they know very little will help their neuropathy patients so they try all the drugs out there in the hopes something might just work. Please don’t fall for all the snake oil salesmen out there hawking their creams, machines and supplements because none of them have gone through rigorous clinical trials to check efficacy. They prey on our pain, depression and frustration that their crap might just help. God bless all of you suffering from neuropathy. It’s a long and painful journey.