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Old 01-26-2010, 09:48 PM   #1
Frustrated10 Frustrated10 is offline
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Join Date: Jan 2010
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I am new - neuropathy symptoms undiagnosed

This month marks the fourth year of having neuropathy symptoms in my hands, arms and legs with no diagnosis. It started after coming home from vacationing in the British Virgin Islands. I developed a fine rash over my entire body. Weeks after that, I developed malaise, weakness, extreme fatigue. Went to MD (several times). Had pain on left side of my face, headaches on left side behind my left eye everyday. Had MRI to r/o MS. EMG normal. Developed numbness in left hand and left lower extremity. After multiple tests, I've been told "we may never find out what is wrong" and was given the recommendation of driving up to Mayo Clinic and "ask to be seen as an emergency case" (if you make an appointment it could take months to get in....if you show up as an emergency, they have to see you within 24 hours, so I've been told). I've been told I have a virus in the left side of my face, prescribed muliple medications. After all that, still no diagnosis. Now I only go to the doctor when I absolutely cannot tough out the pain any longer. S/S are: burning pain in bilateral lower extremities, mostly in the popliteal area. I cannot tolerate any tight clothing to touch my legs, behind my knees, thigh and groin area which exacerbates the burning pain. Feels like my lower legs were scrubbed with sand paper and a hot curling iron is being held to the backs of my knees. It gets progressively worse as the day goes on. I can't sit for long at my desk. My legs feel tight, as if they are edematous, but they aren't. Pedal pulses are good. Legs and feet do get mottled looking in dependent position. Left great toe is dusky most of the time. Arms ache and burn, joints in fingers are getting stiff and painful. Distal phalange left ring finger has developed a bump. My gums and teeth even hurt. My tongue and roof of my mouth burn as if I just drank scalding hot coffee. Fasciculations in lowers extremities. Blood work revealed a vitamin D deficiency at the end of August. I had spent every weekend of the entire summer doing yard work, so no lack of sunshine there! What caused the vitamin D deficiency? Hands are cold and ache when they are cold which goes right up my forearms. When they warm up, they get really red. I was given blood pressure RX and diagnosis of Raynauds for these complaints. I was put on Cymbalta for the neuropathy pain, but it isn't helping and now providers assume I'm on Cymbalta for a psych condition and is the path they always go down when I'm explaining my symptoms....until I push them enough that they actually find a physiological reason for a complaint. They actually look relieved when they find something they can put their finger on. Has anyone else had this type of situation? What did you do or what are you doing to find the answers? What specialty have you gone to? Thank you..