Quote:
Originally Posted by baba222
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.