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Originally Posted by Marie33
Hi Madisongrrl
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.
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You are definitely not alone with the tinnitus. Mine was terrible for months on end when all this stuff started. It has gotten better over time and only flares up every now and again.
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Originally Posted by Marie33
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?
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So hyperacusis and diplacusis are ENT medical terms. There were not diagnoses, but were symptoms that I experienced 48 hours my left ear went crazy. I heard everything 50x as loud as it should be - just in my left ear. The sound of what I heard was split into 2 tones and had an echoed delay. Then the situation just stopped after that 48 hour period...so I'm tremendously lucky.
Along with that, things feel like they are rocking when I walk or that I'm sometimes walking on a trampoline. I wasn't seen at the ENT until almost 1 year after my symptoms started - which is very, very bad (I can thank my HMO for that one). If you've had a condition for a long time, your eyes make compensations and that makes it harder for the ENT to diagnose the problem. So I was given a waste bucket diagnosis of central vestibular disorder (which means nothing), I was told to do vestibular rehab, I was told to immediately see them if anything crazy happens to my hearing again, and they also kinda said "Doesn't neurology know what caused your symptoms?".
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Originally Posted by Marie33
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".
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My neurologist at the UW-Madison teaching hospital told me that I have small fiber neuropathy based upon my symptom description and physical. They said that the progression and quickness of the my symptoms was uncommon. They checked all my labs and ordered an EMG. I had some large fiber damage in my peroneal nerve, but they didn't think it was the cause of this.
I had the option to get a punch biopsy or not. They already knew what it was and told me that #1 cause is diabetes and the #2 cause was idopathic. I don't have diabetes...so I am idiopathic. Well it is a little disturbing that my skin punch didn't show anything, but it didn't surprise me either. The worst pain is located in my arms, face, back of head, back of neck and my back. I did ask them to do a skin punch of my arm - where my physical neurological test showed issues.The neuromuscular department said they only take punches of the leg. So that is probably being coded as a "skin disturbance". The did recommend that I see a doctor at the UW Pain Clinic to manage my symptoms.
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Originally Posted by Marie33
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".
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I'm so very sorry that you are dealing with this. Have a little bit of hope that this could eventually be good news for you. If you nerves are growing back perhaps your symptoms will lag behind the healing and lessen over time. Just hang in there. You must be doing things correctly!!!! Are you doing things like taking supplements, eating well, trying to sleep and manage stress? I bet you are...
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Originally Posted by Marie33
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 |
Awe, don't let my post depress you! If you are in the idiopathic camp and if your symptoms came on quickly, there is a good chance that symptoms might ease up over time. Some neurologists feel that people who have that style of neuropathy might see some good improvement 5 to 10 years after onset.
I did have an EMG/NCS. I had one before my symptoms came on because my leg wasn't healing after several years of having a burning knee - going through 4 physical therapists and even even receiving PRP thearpy from one of the UW Badgers sports med docs. They thought I had a tendon issue. Turns out symptoms started in that same darn leg and spread to my whole body early in 2014. I guess it wasn't a tendon problem
. I had another EMG/NCS 1 year after symptom onset. The large fiber damage was the same for both tests, so the neuro wasn't concerned that it was part of the SFN picture.
You hang in there!!!! Feel free to message me anytime
