Member
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Join Date: May 2013
Posts: 135
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Member
Join Date: May 2013
Posts: 135
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This is very interesting information for me, as I have such a myraid of symptoms with a strong family history of autoimmune disease. I have a negative ANA but positive acetylcholine ganglionic receptor antibodies. My ANA was low positive 15 yrs ago, and with mildly dry eyes & mouth with sensory neuropathy just beginning, they thought maybe Sjogren's. I took Plaquenil for about 9 yrs and ANA was always negative after that. SSA/SSB always negative. I stopped taking Plaquenil about 3 yrs ago since my nerves kept getting worse but nothing showing in my bloodwork.
Is there a way to find a neurologist-rheumatologist-autonomic specialist without going to the Mayo or Hopkins?! My doctors have no clue & don't seem to care much. I like my neuro as a person, but when I showed him the Liza Jane spreadsheet and suggested we may be missing something, he just smiled & said I've had a thorough workup. I feel like I'm wasting time, money & sanity.
My 17 yo was just diagnosed with mild POTS via a tilt-table test, I know I have this without having to be tested.
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Idiopathic Sensorimotor Polyneuropathy
Atypical Migraine
Chiari 1 malformation 7 mm
PLIF L5-S1 Sept. 2013
Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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