Quote:
Originally Posted by madisongrrl
I think getting a skin biopsy is probably the last thing left to cross off your list.
I went through several months of not being able to see well too - the opthamalogist could find nothing wrong. If you've had a MRI to rule out MS and don't have any obvious motor deficits, doctors don't generally seem to dig deeper to figure this out.
I went to the ENT as well. It was a pretty useless trip for 800 bucks it cost to to have him prescribe vestibular rehab to me for my disequilibrium and give me a wastebasket diagnosis. The ENTs look at the nueros for answers and the neuros look back at the ENTs. It's very frustrating when you find yourself in this place.
Besides having burning all over my body, face, back of neck and head, I have symptoms behind and in my left eye, in my jaw, on the left side of my throat and now (this week) it has moved into the left side of my nasal cavity. At the onset of my symptoms, my experience was the opposite of yours, I was hypersensitive to smells. Even that clean laundry detergent smell you have when you put on freshly washed clothes made me want to throw up.
My new primary says that sometimes these things are not well defined or characterized. And as much as that ticks me off, she is very much correct because there is no way to test for this stuff. It could just be strange symptoms of SFN. However, something caused this. I hope you do find someone who cares enough to find a cause.
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I have always though migraines are intermittent and specific triggers, and not constant like all the time. thats why i dispute migraines, and i had headaches only a few times in my life, 1 time from food posioning few years back, and excrutiating neuralgia from a tooth infection.
I did have an MRI back in 2013, for another reason, ENT(kaiser) wanted to see if what was causing my tinnitus in my right ear(i suspect she was looking for vestibular shwannoma) and said it was normal.
I forgot to mention to them, there was burning neuropathy sensations(shouldve mentioned it), because this is indicative of diabetic neuropathy. the burning is actually on my collarbone left side, and my right hand.
i was never checked for MS in the MRI, but i think the neuro yesterday did a physical Neuro test, to see if i had MS symptoms:vision lost, color change etc. She basically did what my kaiser neuro did back in 2013.
The coffee smell test, i experience was very weak, it was weak on my left nostril, and even weaker on my right nostril. deviated septum makes it worst though.
Im pretty sure everyone here has thier neuropathy as constant, and waxes and wanes.
My pins and needles with the other sensations are always here, never going away.
perhaps if told them i had burning sensations they would asked more questions.
I dont know if its possible to get a skin biopsy, i dont know how normal is that for a "Medi-cal" patient.
my neuropathy alternate between different flavors: pins and needles, prickling,tickling, stinging, jabs of pain, joint pain, weakness twitching.
the neuropathy is much more intense on my left side of the body, then the right, but i suspect the right has PN as well, but the loss of sensations is more pronounced. I HAVNT seen anyone that have loss of sensation of their intestines,bladder or stomach, except for those who have diabetes or dysautonomia, which would also include inability to control those organs.
ENt visit is in 2 months, here another long wait. Im getting frustated and tired of this, i dont blame the specialists, only if they dont believe what i have, or try to put it off as depression or anxiety.
the pins and needle is like wearing spider silk gloves, that is gently wrapped around your fingers.
It SEEMS a skin biopsy is neccessary for certain sfn.
the extra lab tests are iron, lead, and something else, but no Vitamin deficiencies. besides the b12 and vit d was tested a while back.
My neuropathy also includes pain, but not as severe as the people described on this site.