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-   -   Young Male with Likely Small Fiber Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/212903-male-fiber-neuropathy.html)

YoungSFN 11-30-2014 11:18 AM

Young Male with Likely Small Fiber Neuropathy
 
Hey everyone. I'm a young guy, 28, with symptoms of SFN for about 2 months now. The pain, numbness, tingling came on somewhat suddenly over the course of several days and was obviously extremely alarming for someone like myself who has been pretty much healthy his entire life. I'm also currently a 4th year medical student and recognized the symptoms so I started doing a lot of research on my own into peripheral neuropathy. I was out of town at the time but got into my PCP immediately when I got back. That's where I stumbled across this forum. I started taking B vitamins and with the worry that might be a cause.

Fast forward since then, I've had the usual workup for SFN minus the heavy metals (no exposure risk so they thought I didn't need it) without any abnormal findings. Since I'm a medical student, I went to see a neurologist through the university who specializes in peripheral neuropathy who performed CMV testing which was also normal. I feel like the way he's talking to me, he thinks I'm a hypochondriac medical student. I'm following up with another neurologist to get second opinion and try to push for a skin biopsy. I've been taking the following supplements since the symptoms started: Alpha-Lipoic acid, Benfotiamine, B Vitamin Complex, Fish Oil, L-Carnitine.

Current symptoms: Burning in feet (worse at night), toes pretty constantly feel cold, sharp pain in the balls of my feet (right worse than left moving up towards toes), aching pain that is worse in the lateral part of my feet, itching in my feet. I've also noticed some numbness/tingling in my left middle fingertip.

After all these symptoms started, my mental state has been a bit of a roller coaster. I'm not sure if the symptoms are stable or getting worse. I was a guy who enjoyed being active, especially with running, which I've been unable to do effectively since this started. The discomfort I've felt coupled with my future career of being on my feet and the upcoming stresses and schedule irregularity of residency have scared the hell out of me. I've never felt such a blow to my confidence. I just recently started taking Wellbutrin prescribed by my PCP, to fight some of the feelings of depression and lack of energy I've been feeling.

I finally decided to post to ask if anyone my age is on here or has had similar symptoms and if they've had any improvement. Is there anything else I can be doing at this point besides continuing my supplements and pushing forward for a definitive diagnosis of SFN?

I want to say that after going through this, I think it will make me a better physician down the road. Based on some of the posts in this forum, I would classify my pain as mild which gives me a new level of respect for people experiencing chronic pain.

baba222 11-30-2014 05:21 PM

Quote:

Originally Posted by YoungSFN (Post 1110495)
Hey everyone. I'm a young guy, 28, with symptoms of SFN for about 2 months now. The pain, numbness, tingling came on somewhat suddenly over the course of several days and was obviously extremely alarming for someone like myself who has been pretty much healthy his entire life. I'm also currently a 4th year medical student and recognized the symptoms so I started doing a lot of research on my own into peripheral neuropathy. I was out of town at the time but got into my PCP immediately when I got back. That's where I stumbled across this forum. I started taking B vitamins and with the worry that might be a cause.

Fast forward since then, I've had the usual workup for SFN minus the heavy metals (no exposure risk so they thought I didn't need it) without any abnormal findings. Since I'm a medical student, I went to see a neurologist through the university who specializes in peripheral neuropathy who performed CMV testing which was also normal. I feel like the way he's talking to me, he thinks I'm a hypochondriac medical student. I'm following up with another neurologist to get second opinion and try to push for a skin biopsy. I've been taking the following supplements since the symptoms started: Alpha-Lipoic acid, Benfotiamine, B Vitamin Complex, Fish Oil, L-Carnitine.

Current symptoms: Burning in feet (worse at night), toes pretty constantly feel cold, sharp pain in the balls of my feet (right worse than left moving up towards toes), aching pain that is worse in the lateral part of my feet, itching in my feet. I've also noticed some numbness/tingling in my left middle fingertip.

After all these symptoms started, my mental state has been a bit of a roller coaster. I'm not sure if the symptoms are stable or getting worse. I was a guy who enjoyed being active, especially with running, which I've been unable to do effectively since this started. The discomfort I've felt coupled with my future career of being on my feet and the upcoming stresses and schedule irregularity of residency have scared the hell out of me. I've never felt such a blow to my confidence. I just recently started taking Wellbutrin prescribed by my PCP, to fight some of the feelings of depression and lack of energy I've been feeling.

I finally decided to post to ask if anyone my age is on here or has had similar symptoms and if they've had any improvement. Is there anything else I can be doing at this point besides continuing my supplements and pushing forward for a definitive diagnosis of SFN?

I want to say that after going through this, I think it will make me a better physician down the road. Based on some of the posts in this forum, I would classify my pain as mild which gives me a new level of respect for people experiencing chronic pain.

Welcome. Yes, the people with SFN, regardless of background, seemed to get loads of disrespect. Not sure if it is the lack of knowledge and/or hubris on the part of the physician.

I would suggest doing every test, regardless, since you never know about exposure in the hospital environment.

Yes, you WILL make a better doctor. More than half of being a good doctor, is ALWAYS believing and listening to your patients. The vast remainder is being able to say I don't know. The rest is communication and investigation.

I have had classic signs of sensory only small fiber neuropathy (SFSN) and have been to two top nationally recognized places and both said I had central sensitization. :eek:

I am not sure if I should stay at one since a well placed neurologist told me a diagnosis would not change my medical management. I think not PROVING your symptoms is very detrimental to future treatment.

As for the skin biopsy, keep pushing and I suggest trying to appear as passive and clueless as possible, so it is THEIR idea.

It is not you--it is THEM, their stress, their lack of knowledge, their exhaustion, yada, yada, yada.

Sorry and hope your symptoms get better soon.

Kitt 11-30-2014 06:40 PM

Welcome YoungSFN. :Wave-Hello:

en bloc 11-30-2014 09:08 PM

Hello and welcome!

You mention having a full SFN workup, but don't mention any autoimmune workup. Your rapid onset and presentation sound like a possible AI process. You should consider asking for labs in this area. Keep in mind that many AI diseases can be positive even if the patient is sero-negative.

Do you have any other symptoms that appeared around the same time like, fatigue, joint pain, dryness, rashes (like butterfly malar rash)...or anything else unusual?

Were you ill with a virus or bacterial infection in the weeks/months prior to the onset? Did you take any antibiotics (especially Cipro or others in the flouroquinolone class) in the weeks/months prior?

Have you had an EMG/NCS...I'll assume if so, it was normal? Keep in mind that small fiber neuropathy cannot be detected in ENG/NCS, so skin biopsy is best test, if you can get someone to order it.

Susanne C. 11-30-2014 09:44 PM

I would be curious as to whether you have any family history of neuropathy. The presentation of your symptoms strike me as fairly classic in early stages of neuropathy, including hereditary types.

Jon_sparky 12-01-2014 01:13 AM

Hi,
Might want to try taking the B12 intramuscularly, to make sure your body can assimilate the vitamin. Have you been tested for vitamin B12?

mrsD 12-01-2014 03:41 AM

As a med student... what vaccines have you had so far?
Some people react to vaccines and develop nerve damage. This is an autoimmune reaction.

I know that many nurses get Hep B at entrance to nursing school.

I see from a previous post here that you have a history of binge drinking in college?

This link has some new research about alcohol damage that is coming to light now:

http://neurotalk.psychcentral.com/post1109420-353.html

It is possible you have more than one cause for damage..and they are adding up.

If you do not consume the nutrients to aid in repair, or you are one of the unlucky ones who genetically cannot repair because of failure to make the nerve growth factors, then as the damage occurs, it is not fixed by the body and remains. Our environment will continue to damage you, so some people in effect develop a chronic nerve damage condition.

CMT as Susanne states, is genetic also. There are many types of it and presentations. So you may want to look into that in more depth.

YoungSFN 12-01-2014 05:24 PM

Thank you for all your replies.

En bloc: I didn’t have any sort of prior period of illness that I’m aware of and hadn’t been taking any antibiotics in the recent past. As far as other AI tests, CRP, RF and Sed Rate were all negative. I don’t have any other systemic signs or symptoms of SLE, RA or other autoimmune processes. The NCS that was done was normal, with some velocities on the low side of normal but still within normal range.

Susanne C: Talking with my mom, she said that one of my aunt’s had some issues with peripheral neuropathy but it started much later in life, in her 60’s.

Jon_Sparky: The Vitamin B12 level taken recently while taking B supplements was ~600.

mrsD: The last vaccine I had before this started was a Tdap about 4 months prior. I had already received my Hep B vaccines when I was younger. I do have an unfortunate history of binge drinking throughout college. I definitely drank too much at times but wasn’t the heaviest drinker I know either (how I justified it). I’m embarrassed to say that these episodes did not cease completely since I’ve entered medical school although they were much fewer and farther between. I brought this up with the neurologist and he didn't think that would be the cause but wanted to get a Thiamine level which was normal. Since the symptoms started, I’ve had a few occasional drinks but it made me so nervous that I might be making the situation worse that I’ve decided to quit drinking completely at this point.

I've been thinking that this definitely could be caused by alcohol since I can't find any other associated factor. It's been something I'm wrestling with a personal level because I feel incredibly dumb and ashamed if my actions brought this on, especially considering my future in medicine. I'm trying to keep hopeful for improvement but after two months I'm worried this is permanent. I've got an amazing wife who has been incredibly supportive throughout this process but I'm worried about wearing her out with my needs.

Thanks to everyone again for responding so quickly.

mrsD 12-01-2014 08:16 PM

If you were taking vitamins and did not discontinue them, and had that test for B12.... and it was 600... that might be a false elevation. One has to stop the B12 for at least 72 hrs and ideally a bit longer, in order to see where you are.

I'd get a MMA test to see if you are utilizing properly. The B12 that is unmethylated in your blood would show up in the regular serum test. But if you have the MTHFR mutation, and cannot methylate properly, you would test okay, but in reality would not have activated B12 working in the tissues. So you are not out of the woods yet with it, I think.

mindovermatter 08-11-2015 06:19 PM

I created an account primarily to comment on this.

YoungSFN: I have similar symptoms. As a 24 year old male, it seems unfair that we're getting these symptoms. It's been a few months. Has anything changed or resolved?

As a sidenote, I also got my Tdap two months before the symptoms started. I also was getting headaches which I attribute to the vaccine.

The only difference is that my symptoms progressed up my peripheral nervous system (hands, arms, face) after a few months.

A reply would be much appreciated! :)


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