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Old 08-13-2015, 08:37 AM #21
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Originally Posted by northerngal View Post
Yes my symptoms started very subtle, and because I was running 5 miles daily, in the gym a lot and very athletic, I thought at first they were just related to that. I casually mentioned it at my annual physical, and my doctor,told me to eat more bananas (potassium).
When my feet started feeling heavy and they were slapping the ground making it difficult to run, I knew something wasn't right and went to my first neurologist.
I spent so much time trying to figure out what it might have been that triggered the PN--but there's so much... my dad used to spray our home and camp lot with spray pesticides when I was a child, I was in the army reserves, and they make you have a lot of immunizations, stress. I had, had the Tdap.. ..then I just decided to focus on getting better and not worry about what may or may not have caused it.
Funny, I thought my neuropathy was due to my interval training and hormones. I must have been deluded because the symptoms were so crazy.
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Old 08-13-2015, 05:57 PM #22
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I've been recuperating since November 2014 from a long-term B12 deficiency. I find the comments about Tdap interesting, I had one mid-January 2015. I've lately been having lots of nerve problems that I attributed to B12 (had some nerve damage), but maybe the Tdap has something to do with that.
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Old 08-13-2015, 07:41 PM #23
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I, too have been diagnosed through skin biopsy, with SFN. It was a huge hassle getting the neurologist to test me. I have other health issues......but, my neuro doc.....soon to be my former neuro doc, tried to tell me it was all anxiety!! I insisted on testing and she found SFN. Are you taking gabapentin? It doesn't seem to do much for me....I'm also on Cymbalta. I will be going to a new neuro doc in October. Good luck to you, son. Kate
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Old 08-28-2015, 07:42 PM #24
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Originally Posted by YoungSFN View Post
Sorry it took so long for an update. I thought I was getting emails when people responded and I hadn't check back to the website in a while.

I'm sorry to hear there are so many other people out there who have experienced something like this. This is a great place for support and answers.

I've had some slow improvement in my symptoms over the past several months particularly. I'm not sure if this is a seasonal improvement with the warmer weather but I've noticed my symptoms are greatly reduced. I no longer have the buzzing in my feet that I used to have and the point numbness and parasthesia after walking seems to have completely cleared up now for weeks. Some of the sensations might also be habituated at this point and I'm just desensitized to them. Either way, my quality of life has gotten markedly better.

I've stopped taking some of the meds I was one before (alpha-lipoic acid, L-carnitine) and instead Im just taking B complex and Flaxseed oil tablet daily. I don't know if this is helping but it's likely not hurting at this point either.

I hadn't heard about others having reactions to the Tdap vaccine. When I brought up the fact I had one 4 months prior to my neurologist, he seemed pretty convinced that it couldn't have caused any of this. Knowing the small amt I know about immune response, it seemed unlikely to me for a rxn to be that delayed but maybe they are related.

I hope everyone out there is finding some improvement as I have. There were some dark times when all of this started and I feel like I've pulled the nose up and have hope for the future. Please feel free to private message me with any questions or if you just need someone to chat with.
This is the best news I've heard all week! Let's hope it continues to improve, not just for you but for everyone here.
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Old 05-01-2017, 09:40 PM #25
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Originally Posted by mindovermatter View Post
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!
I am a 32 year old male who is having the same symptoms as you. Did it ever get better? I know it has been a while but looking for someone who had similar situation.
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Old 05-01-2017, 09:42 PM #26
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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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Old 05-07-2017, 10:31 PM #27
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Confused Central hypersensitivity

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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 #28
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Angry hypersensitive CNS vs SFN - Mayo vs Hopkins

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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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