No postings in a long time

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You may remember me as "statpdq" I have not posted for a long time but have been reading the messages.I just didn't feel that I had anything to offer. I always felt that most of you were much sicker than I. Now I know that is true because I have had numerous doctors tell me that there is nothing wrong with me. I would appreciate it if anyone can help me shed some light on why I am so sick if nothing is wrong. I have peripheral neurosarcoidosis, verified by biopsy of muscles and nerves. I have neuropathy from the knees down. My hands hurt and tingle and my fingers are numb. My midriff is numb. My back is a mess, have had surgery on the cervical vertebrae. I have Asthma and chronic bronchitis. I always felt that it stemmed from the sarcoid. Over the last six months or a year my joints have hurt terribly. I cannot stand for longer than five minutes due to back

pain. I saw a Rheumatologist. He did xrays of my knee and said there is no sarcoid, just severe joint disease. My bone density test was normal also. I cannot see well. My vision is blurred. Most of the time I cannot read newsprint. The Opthalmologist said there is no sarcoid in the eyes. I had a recurring rash on my lower legs. I had no pain because I have no feeling. It was not warm to touch and my temp was only 99 degrees. Twice they treated it as Cellulitis and gave me antibiotics. Then when it came back again they just disregarded it, but they did say that it was not sarcoid. I had a Neuropathic ulcer on my foot that had not healed for the past four (4) years. I have had five grafts plus other treatments. It was 1 and a half inch in diameter and was to the bone. In June they removed a growth from the wound and now it is completely healed. The Podiatrist read the path report as being a Sarcoid lesion. That is a little of my hisory. I have been on Prednisone for the better part of 10 years. I can do fairly well at 20mg/day. When I try to go below that I don't feel so well and actually get sick. I have gotten sick at 10 mg/day and sometimes I have been able to get much lower than that but I always at some point get sick and have to have IV steroids along with fluids and potassium and magnesium. Then I am back on 40mg/day again. When I get sick it is in varying degrees. I have been treated in the walk in clinic, the ER and admitted to the hospital. (At one admission to the hospital the diagnosis was Cellulitus. I was on IV antibiotics at home through a Pic line.) The symptoms always start out as fine tremors. then it progresses to actual jerking (like Myoclonus) I cannot write at all when this happens. Sometimes I feel as if I am having small seizures. Speech problems, where my speech is choppy and that progresses to the point where I

have difficulty speaking at all. My husband tells me that I begin to talk in my sleep. Then I start to fall frequently. My knees buckle and I hit the floor. That too feels like a seizure. A few weeks ago we went on vacation. I had fallen once before we left, once at a motel on the way and a couple of times while we were there. Five days into the vacation I became very sick and became delerious and had to be taken to the hospital. (This time I had gotten completely off Prednisone for about 10 days) When they got me to the hospital I was comatose for three days. The diagnosis was respiratory failure and Congestive heart failure. I was treated with the usual plus antibiotics and lasix. When I got home I made the rounds to see the doctors. My chest xrays showed scarring. The Pulm. Specialist said it was not sarcoid. The asthma was not caused by the sarcoid. And he did not read the path

report from my foot to be sarcoid. He actually thinks the sarcoid probably no longer exists. The Cardiologist did a stress test and an echo and he said he didn't believe I had been in CHF. They took twenty pounds off with the lasix in the hospital The infectious Disease specialist says there is no infection. She put me on antibiotics prophylactically because my leg (with the rash) is oozing clear fluid. My PCP just says he hasn't got a clue. Thank God for my Neurologist. He is the only one who takes me seriously. I know this is long and I am sorry for that but this is scary stuff. Can anyone help? Barb

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