About Me: Female, 54, Fishers, IN, member since Jan 2009
Diagnosed w RRMS in 1993. Have what is called extremely complicated case. Syrinx was found in 1996 but is small and has never grown. Found great neuro to just watch over me as he had records (abnormall SSEPs both tibial, median, Optic Neuritis confirmed by specialist
[More], ssep lesions are above syrinx site so during last and delcining attack in 2001, CSF for first time had 10 X elevated abnormal IGG index and synthesis. Gradually lost all muscle control. Have terrible myoclonus or myoclonic jerks as they are also know and find it very hard to have other dr's out of his area agree with MS. Problem is agreement I am very neurologically impaired but don't have pretty little white spots in new McDonald places. Neurologist in home town did not care - says demyelinating disease which is what MS is or variant but as human being I deserve to be treated. Wonderful doctor who was a investigator for American Academy of Psy and Neurology (examines per request people) and clinical prof at major univ. MS Center. Spent last 19 years with MS and one doctor is focusing only on Myoclonus. I am trying to live one day at a time on 17 meds and hoping medical community will finally acknowledge MS diagnosed properly many years before MRI.... I don't need label of MS but cannot for life of me wonder why Dr.'s just give up when criteria doesn't fit. My doc felt he knew me when healthier, saw me deteriorate as CSF got worse and worse as well as other tests.... My opinion.,, MRI is a great tool but has hurt many young people in their prime who wake up with odd symptoms and spend years looking for answers, being told they are nuts and then finally find adequate neurologist. My mistake, moving!!!
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