As the title of this post reads.......... I have no clue what to think anymore. Let me give you a little history. I have non positive ANA Lupus (biopsy of a removed gall bladder confirmed the lupus), RA, an auto immune clotting disorder called Hughes Syndrome. My meds are Jantovan (a generic coumadin), prednisione, methotrexate, lyrica, klonopkin plus a myriad of NSAIDs. I refuse to continue on any narcotic meds as they do nothing for me. I had two strokes back in 2003 due to the clotting thing. Had too many TIAs for me to even count. I have no real deficits from the strokes. My neuro says I have a seizure disorder which has yet to be confirmed through testing. Had EEGs both regular and sleep (3 days in the hospital). The head of the epilepsy center agreed I had a seizure disorder. My rheumi thinks they are still TIAs. These usually happen when my INR (coumadin level) is not therapeutic. I no longer take the seizure meds. I started to have numbness in my legs and had an EMG but because I am on coumadin the needle part was not done. Nothing showed on this test.
I have since developed other symptoms. Severe burning in my right leg. It started in the calf and now its the entire leg from hip to toe. Driving me insane. My arms and shoulders are becoming weakened. I fall often. When walking I tilt to the left.
MRIs show multiple scattered T2 and flair hyperintensities within the bilateral frontal and pariental periventricular and sub corical whiate matter. This may represent areasof demylenination,post infectious or postinflammataory process, vasculitis or chronic small vessel ischemic changes. Clinical correlation is suggested for further evaluation. SPECT scan shows... deminished neurolite concentration and therefore hypoperfusion of the left frontoparietal regional and clinical icorrelation is suggested. What does this mean? No one will explain it to me.:confused:
My eyesight is getting worse. I have moments of complete blurriness. Urinary incontinence. Speech slurring. Swallowing difficulties. :o
My blood work shows positive RA factor. Bun/Cre high,TSH is low, RDW is high, lymphs low, neutrophils high, C reactive high, platelets high. Blood, protein and bacteria always in my urine.
I just want an answer from the doctors. I don't want to have another illness. I think I have enough already. What I get from them is that the Hughes Syndrome can cause atypical MS symptoms. :confused:
Thank you, LuAnne
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