Hi Elaine,
I can understand because I have been in denial for 8 yrs. I have to let in the reality a little bit at a time. I was working at a large hosp/ital in the neurosciences dept as a RN. First it was just numness and tingling-then progressed to me walking like a drunk. I knew then I needed a walker-and still do. I'm curious if you can tell the name of your doc at Duke. I was worked up there-and the.y basically didn't know why or had no offer of any treatment. Then went to UNC and again very nice but nO answers. Did r/o Sjogren's.
Went to Emory. By this time no reflexes and no response on the EMG. I had low thyroid, stressful jOb (gave it up 6 months ofter this started.) poor diet and had been given Avelox 3 months before my first symptom. I finally saw another doc at EmOry-Jonathan Glass, top 10% in nation (according to USNews)in his speciality of neuropathy. He has seen this b4 and sai/d it was autoimmune all over my body and sai/d /it was /in th.e ganglions-no treatment. I've tried diets, supplements, lyrica(bad side effects) and have had small improvements, scary flare ups, but mainly am stable. It h.as only affected my sensory-no motor involvement. My loss of coordination and loss of position sense have been the worst part. And the pain. I use my eyes to ttell my feet where to go and my hands too. The doc just told me I have fast onset of glaucoma and macular degeneration!So you can make it. I don't need as much rest as I did at first. I keep trying to do things before I let someone else help me to keep up my strength. I hope I've helped a bit-I'll be
thinking of you and this site is wonderful support.