Hello everyone I haven't been on for a while, I hope you are doing better. Wish I could say I was improving, but im not.. been struggling with my symptoms and have been to depressed to even come on here.
As some of you may remember I was diag with SFN around 2 yrs ago. by skin biopsy..
My SFN is widespread meaning I feel it in my legs, feet, arms , hands, Torso and face and mouth. Ive had a million blood tests, MRIS of spine and brain, you name it. They are calling it Idiopathic for now. My symptoms are pins and needles,tingling, a buzzing/vibratory sensation that starts in my head (I feel it loud in my ears) it goes down thru my body and I feel burning patches on my skin as it travels down into my feet, leaving me with burning feet. Ive developed tinnitus , I never had it before! I'm almost embarrassed to write this because I know it sounds crazy. Its difficult for me to tell any of my family members what I am going through because of the way it sounds. I appear normal and healthy to everybody, except for the suffering in my eyes. I take 325 mgs Lyrica, not helping much. My Neurologist thinks 325 mgs Lyrica is adequate. I also take 1.5 mgs Clonopin for anxiety, I take 10mgs amitryptiline at night , it helps me sleep sometimes.
Does anyone else have any of these kind of symptoms? In the last few months , my symptoms have changed and now I have this awful buzzing sensation throughout my body. Should I be more persistent for IVIG treatments. Does anyone think it could help with my kind of symptoms? My Neurologists say I am not a "candidate" for these treatments. I have been taking 1,000 mcg B12 and all the other B vitamins except for B6, for over a year now, don't know if they are helping. I am at my wits end. Dont know what to do or think anymore. This buzzing, tingling and burning for no apparent reason (Idiopathic) is driving me crazy and has made me very depressed. I would appreciate any advice, help or input. It feels like no one could ever understand what I am going through , I hope someone on here can. Thanks in advance
Marie