[QUOTE=madisongrrl;1149177]I'm so sorry. Thank you for sharing this. I too have it in all those places - scalp, jaw, inner ears, throat etc. At the start of all of this, I had wet, hot, warm sensations inside my ears, a roaring case of tinnitus, and a balance disorder (disequilibrium - the floor moves when I walk). I even lost my hearing for 48 hours in one ear - my hearing got turned up to 11 (hyperacusis), after that I heard sound in different two tones with a time delay (diplacusis). This coincided with my worst period of burning.
I have body-wide burning with a normal skin biopsy (2 punches in the leg), large fiber damage in one of my legs, and sensory deficits in my arms (they are not numb, but are dulled and can't sense temperature). It is very frustrating indeed to not find the cause. Hang in there. Do you have any issues with swallowing?
Hi Madisongrrl
I'm sorry you are suffern with this type of pain. I get the "roaring" tinnitus and it coincides with my worst period of burning too. I thought I was the only one, mine is exactly like that. (I do not have a balance disorder tho ) Sometimes I get the "high pitch sound-tinnitus" all day long with or with out burning. And sometimes I get horrible "surges" of buzzing from in my gut that runs down my legs with the tinnitus. I do not get any dulled feeling and I have no loss of temperature anywhere.
what do you mean by hyperacusis and diplacusis? Did you get checked by an ear Doctor? Did he dx you with these "things" going on in your ears?
What is mostly disturbing to me is that you say your punch skin biopsy was normal. Are you saying the Doctor(s) are saying you do not have small fiber neuropathy? What do you suffer from? Im sorry for all the questions.
Rewind: I had a punch skin biopsy (2 sites, lower calf and thigh) in 2012 at that time the results were "mild" : Consistent with small fiber neuropathy. My symptoms were anything but mild and continued to progress. In 2013, I had another skin punch biopsy at Mt Sinai Hospital, NYC. It Showed no progression, but result was still "mild SFN".
Fast Forward..I'm getting worse, more pain, tingling, pins & needles, buzzing, burning, stabbing ,poking, itching, (all over inclding face, mouth & scalp) and now I develop tinnitus, etc. March 2015 , I go back to Mt Sinai Hospital (Dr Lan Zhou-Neuro-muscular Doc). She does another punch skin biopsy (3 sites). I was terrified the results would show progression after 2 years. To my surprise the results came back as "Normal, No SFN"!!! I asked the Doc how could this be with all this pain and burning. She could not explain why there was no correlation between my pain and the "normal results". She said there was NO MARGIN FOR ERROR! She said she counted the fibers herself. My missing nerves grew back! The only thing she kept saying was, this was GOOD news. The "injured nerves were healing"! My Biopsy showed improvement, "I was getting better".
As you can imagine I was excited and confused. But I hung on to her (Doctor) every word. That I was healing or getting better. I'm just waiting for my symptoms to"catch up".
After reading your post, I'm not so sure anymore. I'm heart-broken and more depressed. I don't trust or believe these Doctors anymore. I know I still have small fiber neuropathy!! I hate it, It has ruined my life..
Also, what do you mean by you have large fiber damage in one leg, how was this diagnosed? Did you have an EMG or NCS? Were you told you have SFN (small fiber neuropathy)?
If "our" skin biopsy's are "normal" then why do we suffer the way we do...?
Hugs to you , Marie