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Old 11-30-2014, 11:18 AM #1
YoungSFN YoungSFN is offline
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Default 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.
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DejaVu (08-11-2015), mindovermatter (08-11-2015)
Old 11-30-2014, 05:21 PM #2
baba222 baba222 is offline
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Quote:
Originally Posted by YoungSFN View Post
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.

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.
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Old 11-30-2014, 06:40 PM #3
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Welcome YoungSFN.
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Old 11-30-2014, 09:08 PM #4
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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.
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DejaVu (08-11-2015)
Old 11-30-2014, 09:44 PM #5
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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.
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Old 12-01-2014, 01:13 AM #6
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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?
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Old 05-07-2017, 10:31 PM #7
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Confused Central hypersensitivity

Quote:
Originally Posted by baba222 View Post
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.


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.
Mayo said I have hypersensitive CNS too. Hopkins says SFN by all testing is normal.
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Old 05-11-2017, 08:58 AM #8
Goosiegoo Goosiegoo is offline
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Angry hypersensitive CNS vs SFN - Mayo vs Hopkins

Quote:
Originally Posted by baba222 View Post
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.

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.
Like you, I was told I had a hypersensitive CNS at Mayo.
I went to Hopkins last month and had my skin biopsy re-checked - it was totally normal but my neuro says I have SFN based on history and his exam.
It's so confusing. Doc says that my fibers may look formal but are not functioning correctly.
I have feet issues - toes can burn or feel cold and they will turn red if I exercise in the evenings or sometimes just before bed.
I'm not sure if I have erythromelagia too.
I also have frontal thigh burning and my left arm can feel badly too.
I'm 48 and otherwise healthy - possibly a mutation in the sodium channel.
Feeling your frustration.
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Old 05-01-2017, 09:42 PM #9
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Quote:
Originally Posted by YoungSFN View Post
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.
I am a 32/M did and having similar symptoms after a TDAP shot. Did your symptoms improve with time?
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