Increasingly Difficult to Accept Peripheral Neuropathy

I would like to add something else for consideration. I also have PN in my feet and ankles and take the much hated drug Lyrica for the discomfort. I read the posts here and understand that everyone is on their own journey with PN. I was only diagnosed earlier this year but knew what is was about 1 1/2 yrs ago. My thought is that the bulk of research dollars goes to heart and cancer research and until neurology research is well funded nothing will change. I disagree agree with wishing our doctors would just come clean and say "sorry no real help for you" but I think that goes against their training. I do think that it is each of our responsibility to come to grips with the knowledge that there is currently no cure and whatever bandaid we use (exercise,pain meds,massage,etc) is going to have to be enough and get on with our lives. Some days that bitter pill is easier to swallow than other days. Today I am happy to be clear of mind and intelligent enough to hold up my end of a conversation. My girlfriend's husband was just diagnosed with early onset dementia. Please remember to be thankful at least once a day

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.

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.

Many moons ago a very eminent neurologist whilst trying to discover a problem I was having at that time came up. When he spoke to me what he said was in life there are simply things that we don’t have an answer or a name for not yet with peripheral neuropathy, I feel pretty much the same. I accept it I don’t like it and I’ve checked in England and I often go to the mayo clinic to see what if anything is out there so again zilch. I seldom if ever read medical ads preferring as I said earlier the advice of Doctor and looking into research let me know if you have any better luck than me thank you Margaret

I check Pub Med a couple times a year to see if any papers on PN have been published, and scan internet once a year to see if anyone looking for subjects to participate in Clinical trials (I’d def volunteer). It would be interesting to know what clinical and research orgs are focusing on PN treatment and research so I can narrow down what I have to wade through to those places that are actually conducting first rate research on humans. I’m not interested in reading about mouse studies. I don’t think Mayo is one of those orgs.

I’m like a fish woman a cast my net far and wide in the hope of catching something. Any information anyway to slow it down but so far nothing. Fortunately for me I don’t have the pain but I have the increasing weakness stiffness in ability to walk too far And for the type of person I am that is the most frustrating part of all but hey Ho, how we go keep fishing you never know.Good luck

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.

https://clinicaltrials.gov/study/NCT02427464