idiopathic small fiber peripheral neuropathy
Hi- It has been about 3 yrs. since I posted on NeuroTalk. My symptoms started 10 yrs. ago after explosive dirrhea in a Third World Country. Had aches, chills, neck ache. Next night I felt a painful jab of pain way up high inside my nose -and I mean way up high. Then I felt my sinus secretions run like water for about 5-6 seconds and then thickened up behind my nose. A few days later, I had waves and waves from head to toe of prickling all over my entire body, that happened about 8 to 10 times. After that my abnormal sensations started in my face and worked it's way down to my feet. Needless to say Full Body. Abnormal sensations like water was running over my face, felt like water was running out of my ears and that things were coming out of my nose. I had 2 skin biopsies a few yrs. ago and was diagnosed with small fiber peripheral neuropathy. One biopsy under my eye/where maxillary sinus would be and the other was on my calf. My sinus secretions had gotten real thick, had sinus surgery and this made things worse. I tried IV Igg and plasmaphoresis- didn't help. About 1 yr. after I got sick, I had a spinal tap which showed WBC at 9, the doctor said that they like it to be under 5. Here I am thinking after 1 yr. and my WBC is still elevaated why didn't they do something. Doctors just said " probably some CNS infection residual". Hey - that would be my brain. One neurologist said I had a brain lesion right on the spot that would control my autonomic nervous system. I tried every drug and nothing ever helped. My sinus issues had gotten worse. I have been irrigating them 2 times a day for 10 yrs., My under eyes swell up, then down, up and down. Talk about stretched out skin under my eyes. 24/7 post nasal drainage, it never, never stops. I checked out allergies. Had shots for 5 yrs., didn't do anything for my sinuses. I am just about to give up. I got this when I was 45 and now I am 55 yrs. old. I am without a job, so is my husband, no health insurance anymore. My husband just keeps saying "We'll get you fixed" My kids think it's all in my head. (I got proof that it's not) - my kids are 30 yrs. old and one is an RN Manager for a brain injury unit. You would think she would understand. NOT!!! She tells me that I don't want to do anything and that I am depressed all the time. Well don't look now but I am. My other twin daughter lives back at home with her 3 kids, 3, 5,6. I was watching them up until a few weeks ago. All I take is 2,000 mg fish oil, calcium citrate with Vit. D. (my levels are good) baby aspirin, vit c 500 mg. and R-liopic acid 100 mg. Please help me, don't know how much longer I can stand this, espically my face and sinuses. Doctor said there is nothing new and nothing to help with SFPN. Any advise or input would be wonderful.