Increasingly Difficult to Accept Peripheral Neuropathy

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.

Good morning!

This topic's title, "Increasingly Difficult to Accept Peripheral Neuropathy," to which I say, Oh, yes! But what I find difficult, even increasingly so, are not the symptoms or the meds or the seemingly endless doctors' appointments; no, what I find difficult is the way peripheral neuropathy has reduced my life, shrinking it down to the narrowest of pleasures.

Wisdom says to resist, that aging itself is a narrowing down; the addition of a chronic disease like PN, however, only accelerates that narrowing down. I see fewer friends. I go fewer places. More and more I find myself turning down invitations.

Most damaging of all is how a disease like PN can erode a person's sense of purpose. From the moment I was diagnosed, I had resolved never to "become my disease." I've learned, in the months that have followed, what a challenge, what an uphill battle that can be: to not become your disease; instead, to remain––in your friends' eyes and, most importantly, in your own eyes, something of the person you've always been.

I'm not sure why I'm letting this all pour out this morning. Probably it's been on my mind. Probably just seeing this topic's title set me off. 🙂

Anyone else have thoughts along these lines?

Ray (@ray666)

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.

Every day my friend, every day 🙃 - the mind is a powerful thing. Maybe that's why it helps to stay positive. What really gave me a lift this morning was our latest Connect member spotlight - Don’t leave the good parts out: Meet @jlharsh - https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/dont-leave-the-good-parts-out-meet-jlharsh/. I loved the lyrics of the 2 songs in the spotlight.

Amen, John! Or as Hamlet said, “There is nothing either good or bad, but thinking makes it so” I fancy myself a champion positive thinker, but what got me off on this morning's toot was finding myself alone last night. (My partner had spent the night in the hospital. She's back home now.) Alone last night, I suddenly realized how living with another provides an automatic, dominant set of activities. Alone is another story. I know that for so many of us on Connect being alone can be a horrendous burden––people for whom being alone is not a temporary thing (as it was for me). At the same time, the truth I found myself confronting was that before my PN, single or partnered, I'd always lived a life that was seasoned with alternative activities. PN has largely robbed me of those alternative activities. That's what I was feeling last night. I'd become aware of how much more difficult, with a chronic disease like PN, it is to keep your life active and "peopled." It takes deliberate work, doesn't it, John? Ah, the life lessons PN teaches us! 🙂 ––Ray (@ray666)

Good morning, @ray666 ~
Been reading these comments with a lot of interest, and I think the "alternative activities" is what stood out to me. Gosh, this is quite a topic to consider, especially for those of us who find ourselves in our upper seventies/low eighties. I have lived alone now for 12 years, having lost my husband to cancer in May of 2013. I think we already visited about the circumstances in a former "conversation" but maybe not the 17 years he battled 4 totally unrelated (as far as cell structure - no metastasis) cancers. Somewhere in this journey, I realized that it was imperative for me to cultivate some "alternative activities" THEN, so that I would already have formed new friendships & groups that would be in concert with my life as a single person. One outcome of the Covid pandemic was the availability of gatherings to take place on Zoom as well as in person. Now, this is truly a gift to those of us who find mobility robbing us of our energy, timeliness, and dignity. The activities I chose to be a part of - an international Bible Study and the associate program with a local religious order, were both in-person activities at the time of my initial involvement, but both are now on Zoom as well as still in-person. I choose to attend the gatherings on Zoom because I can be depended upon to show up. Otherwise...well...chances are I'd have thrown in the towel years ago. During those years of my husband's illness, I knew where his life and mine were headed, and I guess it served to motivate me. But, wow - to quote someone who knew his stuff, this business of aging isn't for sissies, is it?
Have a really good weekend, Ray! I'm glad your partner is home from the hospital. Here's to good days ahead!
~ Barb

Good morning, Barb (@bjk3)

Thanks so much for your thoughts on my post! I was hesitant to respond as I did because I knew I was twisting the topic's original intent, but then I thought, Oh, heck, my response is honestly what popped to mind as I read the title, "Increasingly Difficult to Accept Peripheral Neuropathy"––not the difficulty I might be having with my wobbly balance and it's refusal to go away, but instead with the awful––and infuriating!––way PN has shrunk my life. I wrote my post the night my partner was in the hospital and found myself knocked for a loop by how hollow my life felt. I believe I added something in my post (I hope I did!) about fully knowing how pathetically unfair it was for me to be moaning about the absence of a partner who was only going be "not there" for a night or two, when so many of us––"all" of us, given enough time––have endure the absence of loved ones permanently. What I had hoped, however, in finishing my post was that I'd gone on long enough to pass beyond the "Oh, woe is me!" to the wake-up call I heard that night: How importance it was that I keep my life "peopled," and seeing the frightening degree to which––since the onset of my PN––I'd allowed my life to become "un-peopled." That wake-up call, as I think back on last Wednesday night, was the true value of the experience: To never forget how I felt and to let it be a reminder to do a little something every day to keep my life "peopled"––that if I don't do that little something every day, PN will win. I can't let that happen.

You, too, Barb: Have a great, great weekend!

Cheers!
Ray (@ray666)