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Jul 24, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.