Treatment options that have worked for Small Fiber Neuropathy

Good evening, @moakes. I want to follow up with you on the subject of MFR therapy. I have been an MFR patient for 11 years. One of the reasons I left my beautiful mountain village was because the city I live in now has an MFR clinic, so to speak. I have two therapists in two sessions a week. One works with my feet, neck, and hands, and the other works on my arms, legs, and anywhere else that has heavy-duty pain and discomfort. I would say that it has worked well for me as long as I realize that there is no cure.

Here is a helpful link to explain what happens under our skin. I was very amazed.

Zone therapy.......no I have not tried that process. Will check it out before we get together again.
May you be free of suffering and the causes of suffering.
Chris

My neuropathy was also called idiopathic. It lingered in my toes only for years. So, I took a B Complex that had 100 mg of B6, thinking it would help. It made it worse and traveled up my calves and caused balance issues

In September, I discovered that the B Complex had caused B6 Toxicity. Since quitting supplements and following the free simple Protocol on understandingb6toxicity.com, my symptoms have improved. It is a matter on modifying diet, exercise and hydrating.

@smutcher - I agree with you on the B-6 issue found in B-Complex and Super B Complex. The amount of B-6 can be about 3 to 4 times above suggested daily amount. I stopped taking B complex a while back, not sure if is the cause of my PN. It's hard to believe that manufacturers are permitted to put high levels of B-6 above the
3recommended daily amount. Bottom line, read labels on all supplements.

Oh my God , same thing happened to me . I have seen 2 neurologist and. Rheumatologist and my ANA was positive and was turned down by Mayo 3 times because too many requests . I feel the same way, there is something missing and no one want to take the time to investigate

And I did check out Zone Therapy @moakes. I think that is what I call reflexology. In fact, one of the members of our mindfulness group brought "kits' for each of us last month and showed us how to use the unit that you rub on your skin wherever you are experiencing discomfort. I haven't used it too much.....but it is great when I am watching the news and my nature shows.

Thanks again.
Chris

Here is a link I found a few days ago. It is easy to understand and condensed. It seems so many doctors don't have a clue about SFN and I think sharing the graphics showing what you are experiencing might help your doctor's visit. https://suzycohen.com/articles/small-fiber-neuropathy-its-different/

I understand your frustration with peripheral neuropathy. It is often very difficult to diagnose accurately, and the standard treatment is often not as successful as it is in other diseases. Also, I understand how posting frustration on this forum, and connecting to others with similar experiences can be helpful.
However, your post crosses a line. Most doctors have much more than "a clue" about peripheral neuropathy, especially, of course, neurologists. It is simply a fact that PN is one of those diseases that is not yet well understood or treated. Idiopathic PN, being of unknown cause (by definition), is especially difficult. However, there is a standard diagnostic tool for small fiber PN (skin biopsy), which is well known and used frequently to make that diagnosis, contrary to what is said in your posted article.
In fact, I read part of the article you posted, and it is full of misinformation. My problem with posts such as yours is that they may discourage patients from seeking appropriate medical care. As an example, see the post above about taking too much vitamin B6.
Any honest doctor will admit that the state of the art regarding PN is less than satisfying. Also, trying new things on your own may be helpful. Every reputable medical professional is trying his or her best to help patients with a very challenging condition. They use the knowledge gained from thousands of studies (just google peripheral neuropathy) and years of training and practical experience. Obviously, this is not true of others who, without proper training or experience, are trying to make a quick buck. All of us (patients) have to be very careful of what we try and where we spend our money. The place to start is with the experts.

I’m not sure why you think the previous post crossed a line and the linked article is full of misinformation. The article does talk about a skin biopsy as the best way to test for SFN contrary to what you say in your post. Also, the article contains nothing out of the ordinary that I haven’t read before but does a good job of summarizing symptoms and treatments. As far as many doctors, including neurologists, not being well informed or helpful in treating SFN, that has been my experience also. I am on my third neurologist and finally feel I have found someone who knows what they are doing. First two were terrible.

I think the previous article about which you complained was pretty much on point. (BTW, I retired as editor of a clinical surgery journal, so I do know something about medical research. I also have suffered since 1991 with PN, and have since been diagnosed with at least 4 other forms of neuropathy, including idiopathic multifocal polyneuropathy.) While neurologists learn about PN in their first year, they are frustrated because it has no cures or even treatments other than symptomatic treatment (which is not very effective in all or even most cases. So they go on to concentrate on epilepsy and many other neuropathies that are more well-studied and "interesting." and that have proven treatments or even cures. Finding a neurologist who really knows and cares about PN is very difficult. After more than a decade, I recently found one!

I have quite a few chronic (and sometimes also incurable) comorbidities, and my new neurologist has confirmed that my PN can be associated with, exacerbative, or even causative of several of them--not including the rare, incurable, indolent lymphoma which may ultimately do me in and which was probably the originator of my 34-year journey with PNs.

Look, look, look online and elsewhere for neurologists who include PN in their specialties or concentrations, and pray that at least one of them works within a reasonable drive-time of where you live.

I wish people would stop talking about "idiopathic polyneuropathy" being a "diagnosis." It is not. It is a failure to diagnose. I spent four decades working as a medical reporter for national publications, worked as a PDR editor and as a ghost writer on numerous medical-related books. There are very few neurologists who have any real grasp of the complexities of neuropathy. When I consulted one of the most widely published neurologists for a referral to a PN specialist in a major city near me he said there wasn't a single neurologist there that he could, in good conscience, recommend.