[QUOTE=Marie33;1114271]
Quote:
Originally Posted by Healthgirl
Any insight, personal stories, recommendations, would be appreciated.
Hi Healthgirl,
I'm sorry to hear your going through so much suffering. I was also dx with I-small fiber neuropathy. Your symptoms started a little different then mine, which started back in 3/2011. I was also active and ate healthy. Out of the blue I was getting pins and needles in both calves and burning under my feet. I also had tons of tests (bloodwork, MRIS-Brain & spine, EMG/NCS, more bloodwork) that all checked out good. My SFN was dx by a punch skin Biopsy done by a Neuro/muscular Neurologist. It has since progressed to my arms and hands, torso, scalp, face,mouth...I have it widespread. I had/have every symptom of sfn. (tingling, buzzing, stabbing, lancing, sensitive hands, burning feet, hot-spots all over my body, etc) My shooting pain is in my legs and feet. I also get the "surges of buzzing in my upper body" like you do. Its so bad I can hear it in my ears and head. ( I never had tinnitus before this happen to me)!
I do not have orthostatic hypotension, or any other autonomic symptoms, (except for occasional over-heated feelings when I feel the burning I get up and down my legs). How low does your blood pressure get? How did you get your sfn diagnosis? Did your Doctor/Neurologist send you for a Skin Biopsy? I feel for you. I know how debilitating the pain and symptoms of this dreaded disease can get. Are you taking any medication(s)? I take 350 mgs Lyrica, Tramadol for break-thru pain, (which don't help) and Klonopin for anxiety caused by the pain. I tried all the B Vitamins, supplements, nothing worked for me, but it doesn't mean they can't help you. My life has not been the same since this started. And yes, some days are much worse then others. I would like to talk to you privately about your tingling and buzzing if that's ok? The "surges of buzzing" and burning are my worst two problems now. I feel like my Doctor(s) are missing something and just don't care anymore. I'm still searching for a "cause". I still can not except Idiopathic!  Take care.. 
Marie |
HI Marie,
I am not taking anything regularly yet. When it gets unbearable I take pain and muscle spasm relief which helps calm it down some. I am determined to find a cause and get the proper treatment before I go on daily symptom drugs. Right now I prefer to feel what is going on until I can't take it. I have tried B's and many holistic treatments to no avail. I wish it was that simple for all of us. I am terrified of the possibility of being on daily meds that just cover up symptoms of something attacking me! If thats what I have to do, when the time comes I would though. I have a prescription for daily nortriptyline and tramadol which I have not tried yet. Does the tramadol help at all?
There is absolutely a cause for this and after having been through a few neurologists, 2 rheumatologists, and a few other doctors, I am trying to stay positive that I just haven't found the one that wants to "think"! I was even told by a columbia spine surgeon that I have to keep searching till I find the doctor who wants to figure this out and maybe treat me with immune suppressive drugs to stop this process. He said that the medical world is all about money. Time is money. Thought and effort require time so they are quick to push us out to fill up as many time slots as possible. Idiopathic is so easy for them to say. That is not a diagnosis. I already knew my nervous system was being wrecked. It was completely obvious. All this dr. did was punch biopsies and sent it to a lab after spending 5 minutes with me. Needless to say, she is not the doctor for me. She was nothing more than a technician. She said maybe a virus, maybe autoimmune.... try a rheumatologist.
The low blood pressure makes me dizzy a lot and I have to stand very slowly and sometimes get back down. It causes disorientation and agitation. Pretty miserable and hard to take when I was so high energy. I don't know what the numbers are but they told me it was from my autonomic nervous system. I am on a waiting list for the autonomic testing in Feb. to see how bad it is.
Have you tried a gluten free diet?
Ill try to pm you. Im just figuring out how to use this sight.