speaking from my possible MNGIE Dx and all the sx's aligned with any all these. I can only ask, how impressive it is to have this depth of information. ONLY to recognize people like myself seeking ANY MF AMA physician who CARES that listen to my misery as well where the FK to go..as usual the industry is so proud to do research with Data that goes unused*, NO one getting help on this probable genetic autoimmunity. SHOW me where i can get HELP of any kind? that wont deny me IE: "Barrows", in Phoenix and "Mayo" in Scottsdale. My neurologist Stephan Flitman as well my D.O Dr Alessi in Arizona on infectious disease docs are shrugged shoulders not knowing where to send me..i had to order the Genetic TYMP test.. I had to ask for MIBG or Pet for neoplasms and the Spinal tap(-) in all syndromes GBS MG MS etc.. so now what..?
Post;;; rt pontine vestibular CVA, left hemi 3 years ago had good rehab with muscle then i'd say got 85% back. now progressive last 2 years plus atrophy legs arms bilat weakness deep fatigue near POTs alike any exercise from kitchen to bathroom faintness nausea dizziness. bilat peroneal neuropathy severe, actual double vision cannot focus on anything nystagmus alike. this "Bilat" progressive misery is why i know it aint the CVA affiliated maybe potential partial affected by the cva but not the cause. from Mycotoxin, "fire on the brain" versus MNGIE the sigmoid perforation last year certainly made this misery just that much more intolerable.
thanks
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17.54 ....55.45 α-FP
speaking from my possible MNGIE Dx and all the sx's aligned with any all these. I can only ask, how impressive it is to have this depth of information. ONLY to recognize people like myself seeking ANY MF AMA physician who CARES that listen to my misery as well where the FK to go..as usual the industry is so proud to do research with Data that goes unused*, NO one getting help on this probable genetic autoimmunity. SHOW me where i can get HELP of any kind? that wont deny me IE: "Barrows", in Phoenix and "Mayo" in Scottsdale. My neurologist Stephan Flitman as well my D.O Dr Alessi in Arizona on infectious disease docs are shrugged shoulders not knowing where to send me..i had to order the Genetic TYMP test.. I had to ask for MIBG or Pet for neoplasms and the Spinal tap(-) in all syndromes GBS MG MS etc.. so now what..?
Post;;; rt pontine vestibular CVA, left hemi 3 years ago had good rehab with muscle then i'd say got 85% back. now progressive last 2 years plus atrophy legs arms bilat weakness deep fatigue near POTs alike any exercise from kitchen to bathroom faintness nausea dizziness. bilat peroneal neuropathy severe, actual double vision cannot focus on anything nystagmus alike. this "Bilat" progressive misery is why i know it aint the CVA affiliated maybe potential partial affected by the cva but not the cause. from Mycotoxin, "fire on the brain" versus MNGIE the sigmoid perforation last year certainly made this misery just that much more intolerable.