43 y/m new to small fiber neuropathy - help answer some questions?

You’ll probably get a lot of input based on what others have discovered. I’m curious about what you were told about the skin biopsy. Did doctors say how that helps with treatment? I ask because I discussed it with my neurologist and he didn’t find it necessary. I suspect one reason is that even if it’s positive, how does that change treatment recommendations? So, I’m determining if there is no real reason for me to pursue getting it done. I’ve had 2 neurologists tell me I don’t have neuropathy, so since I have paraesthesia…….I’m weighing my options.

In 2023, I had some burning, zaps, etc. but after I started B12 regiment those issues went away. Others remain. It’s a mystery I think for many.

Hello @immuno1982, I wished I had some answers for you other than a funny story about the "idiopathic" diagnosis. Back in 2016 when the Minnesota Neuropathy Association was still in existence one of the speakers we had was an 80 something year old neurologist from the University of Minnesota that was still practicing. He was with two other speakers and spoke last. One of the previous speakers had mentioned a large percentage of people with neuropathy have a diagnosis of idiopathic neuropathy. He then gave us his interpretation of how the diagnosis came about - it was named after some idiot who couldn't figure out what caused the neuropathy.

I have idiopathic small fiber peripheral neuropathy that started in my toes in my 40s but I didn't get diagnosed until 2016 in my 70s because I was worried about progression. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I'm glad to see that you are doing your own research. That's what brought me to Connect back in 2016 after I was diagnosed and trying to find something that would help slow or possibly stop the progression. It looks like you have already connected with a few members in other discussions so I hope you get some answers and continue to search for a treatment that will slow/stop your progression also.

I think you will find that the search function of Connect can be quite helpful to find other members who share some of your symptoms. Just type in different phrases using a question you have to find other discussions and comments from members.

@celia16 was ur b12 low? What was ur regime and how long did it take to start feeling better?

@immuno1982 Dear Friend, Welcome to a wonderful community of people who offer a lot of support and encouragement for a plethora of things! Let me first just say this - everyone's struggle is different, so no two people are exactly alike in this. I am a fellow idiopathic SFN sufferer and my journey is completely non-textbook in just about every way. I originally posted my story on here years ago, but a lot has changed since then and I'm not sure how to find it anyhow (@johnbishop is a great resource for this). But, I'll be glad to answer your questions to the best of my ability. I am 35 btw, and my journey started around age 19 but I never dealt with it until I was in my early 20's (and I still see my neurologist regularly). Here goes...

Question #1 - Agree! Remember, you are the only one who is inside your body and can recognize the red flags. Sometimes, the proof is NOT in the pudding...My neurologist trusted my gut enough to know what it was and he did skin biopsies merely as a formality (which didn't lie). It was a small hand problem that erupted, and my hand Dr that recognized the bigger problem(s) and after multiple surgeries I found my current neurologist, who's a godsend.

Question #2 - I didn't have any of those symptoms initially, but mine did progress & spread over time. But, add CRPS into the mix of things and it's bound to happen. Plus, I have 3x different types of neuropathies + ALS4 etc that make it complex. In the beginning, I had right hand weakness and weak fingers plus minor numbness.

Question #3 - Everyone is different. I'm sure the stats reflect a bigger % re: majority of "normal" types, symptoms, etc. I fit every minority percentile there is, unfortunately (and yet vice versa, bc I can relate to the non-conformers per se, lol). Personally, I'll never stop doing my own research, looking for answers / new remedies, pushing my Dr's and being my own advocate. A lifelong struggle naturally calls for such means. My neurologist did tell me that typically, yes, most people have minor forms and can manage it OK w/o being too disabling. I'm headed in the opposite direction, and mine has always been severe (for the majority, not initially). There are many ways to get adaptfully creative, so don't lose hope there. I'll probably be in my 50's (or sooner - no telling) when my disease fully takes over, so I'm just doing the best I can with the time that I have left. The other thing I'll say here - everyday is different and the struggles (or not) that come with it. I'd encourage you to remain optimistic and wakeup everyday having no expectations, minus the basic one i.e. that you have SFN. It's not a curse, tho some days it may feel that way (I've been there). You have many people who understand and will help you in any way that we can. We gotcha friend!

Question #4 - Lyrica = Cymbalta (they are one and the same). I have never taken Lyrica, so I cannot vouch for it one way or another. I've heard mixed things about it. Now, I have been on Gaba for years and I have mixed feelings because it is the one medication (in tandem w/ other measures) that really helped my pain levels, but it comes with nasty withdrawal symptoms if you don't take it on time because it doesn't keep a therapeutic dose in your system. I am currently trying to get off it for the third time (for personal reasons) and have been unsuccessful thus far, but I'm not giving up. However, it has 0 contraindications with other medications so it is entirely safe and no major symptoms besides (for me) some problems with mental clarity, but it's definitely tolerable and worth it. I'd also suggest looking into Lamotrigine (Lamictal) and / or Levetiracetam - there are regular and ER versions for both meds - those are the other two that have helped me, and can be safely taken in combination w/ Gabapentin (not all 3 together - 1 or the other w/ Gaba, I mean). Also, Gaba can be taken safely in pretty high doses daily, but the bad thing comes when tapering down (takes longer, I mean). Just fyi.

Question #5 - Flares usually occur because they are triggered by something (may not always know). For me, I've had both - i.e. flares that started w/o any identifying factors and others bc of skin sensitivity, etc (things I knew would trigger it). They will come and go - mine are not regular (e.g. every month), but they are as far as knowing what to expect once they start and how long they'll last. But, that's me. It is absolutely possible to have periods of time where symptoms don't feel so severe and you can function more normally, yes.

Question #6 - The progression is statistically slower than other types - e.g. large fiber neuropathies, but mine was exacerbated pretty quickly. The first few years of mine were "slow," but I was aware of the progressions. Unfortunately, the combo of CRPS + other neuropathies quickly sent it over a cliff; so, I was kinda doomed. Hopefully for you, that will not be the case. You have a lot going for you and there are a lot of options you have to try that may greatly increase your quality of life. It's knowing what to fill your toolbox with. I certainly have numerous suggestions if you're interested. Feel free to DM me if you want to talk more in depth.

Hope this helps!! 🙃

@rivermaya34 YOU ARE AMAZING! thank you for this awesome reply. I may take you up and DM you for more information.

@immuno1982 , test before starting supplement of B12. I was diagnosed with a deficiency. Mine was below 200. I went on injections at first 1000 units per injection once per week. Later, I went on sublingual B12. One thousand units per day. I have reduced that to 2000 per week. It takes a long time to restore the body and not just the blood.

I am not certain the B12 caused my symptoms…..I also had post covid syndrome and other symptoms, I won’t list here.

@immuno1982, I think this is the post @rivermaya34 mentioned where she shared her story when first coming to Connect - https://connect.mayoclinic.org/comment/648348/.

P.S. - If you ever need to find one of your older posts you can click on your member name or your profile icon at the top right of any Connect page to go to your profile. Then click Comments in the left menu. If you have a lot and you know it was shortly after you joined, just click the Last page link at the bottom under your comments.

@johnbishop I knew you would find this and have all the answers!! You're such a wealth of knowledge ☺️ TY!

@immuno1982 I'm a total idiot and told you something wrong UGH. I know better....smh. I am so sorry, it just hit me...

Lyrica = Pregabalin
Cymbalta = Duloxetine

However, I did tell you correctly that I have not taken Lyrica nor Duloxetine, so I cannot vouch for either. *sigh* This is what Gaba does to me some days lol - takes my brain cells away! Jk. 😉