I am visiting from the lupus forum, my limbo ended with a pretty quick diagnosis, compared to most. I see a neuro who actually speculated I might have lupus AND ms, without lesions, rare but possible......but needed a spinal tap to confirm. Since it wouldn't have changed my treatment, I put THAT off. Now, 4 yrs. later, I am too sick and too exhausted to work. I just resigned and am applying for permanent disablity. Back to neuro, donated quarts more blood for the lab's pet vampire bats.... oops, I meant lab TESTS! and he is doing a new one, ..antiacetylcholine receptor antibodies, which is a test for myasthenia gravis. He concurred that my neuro testing is consistant with CNS lupus, but my extreme muscle weakness abit unusual. And, he suggests I add methotrexate or cellcept? to my prednisone. I am going for a bone density scan on Tues. and then back to my rheumy. I feel so blessed to have good insurance and be able to retire with at least a small monthly check. When I read these posts I went WOW! so much like me it's uncanny and reassuring. I'm not crazy, or imagining things....My vision, impaired hearing and pain in my rt. ear, ataxia, I keep falling and walk like I'm drunk, failed my "field sobriety" test in the dr's. office, numbness and tingling in my arms and legs. I didn't give up, I KNEW something was wrong with me. I see 5 drs. now, GYN, PCP, rheumy, neuro, NP and accupuncturist. And I am so grateful for the Healingwell forum. If I could live on 40mg of Prednisone every day I would be fine. At least it is summer and I won't be so cold...
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.