Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Hi. My NS was confirmed in my cord st C4-T1 2 yrs ago by biopsy. Been on Cellcept (3g/day) and prednisone (varying from 40 mg/day now down to 10mg), with Neurontin(3000mg/day), Wellbutrin XL (300mg), Warfarin (5mg/day, therapeutic 2.8 PtINR), folic acid, potassium, Triplix, Crestor, Metformin, and occasional Vicodin (10mg/350 of Tylenol). I need Tyleniol PM to sleep. I have large swelling L ankle/hand, high pain R foot/calf/knee/lower thigh w/severe cramping L side from chest to groin, no feeling LH fingers pinky to middle, loss of feeling RH pinky. Loss also lower L arm topside. No temperature feelings below chest, except for bottom of left foor. Some neck/back pain. Have been a very high tech designer/mathematician, but am having a hard time w/all the fuzzy thinking from all these meds. Besides prayer, physical therapies and my loving wife, is there anything anyone here can suggest I do or keep tabs on medically to help? Hanging in each day is hard and I worry how long I can keep it up. It worries me that my doc in '95 said ave life expectancy of regular sarcoid, which I had/still have in my lungs (and is stable), was 20 yrs from diagnosis....do I play now, or still save heavy for a retirement? Does Social Security SSI recognize sarcoid as a disabling disease yet? Do they add anything past 65? Quote Link to comment Share on other sites More sharing options...
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