Hello. Maybe 17 months ago i was hit by car crossing street. it took a long time to get any help. stanford finally diagnosed me with TBI. At this point my body / trunk / pelvis had become quite deformed and i had developed what they called "post tbi movement disorder with athetoid like symtoms"
I have to use a cane and my body is getting worse. from pt i found out most of it seems to come from "trunk" which makes my body almost be in constant motioin.
all this is new to me. i hadn't heard of any of this until after it was noticed.
yesterday i finally got into ucsf movement disorder clinic. spend half hour or more with resident. then doctor came in sat down and said nothing is wrong and it's all in my head.
i had brough a full body scan which showed the strange form of my body and pictures as well. I asked her so i have created all of this. my trunk is now basicalaly deformed. head is way in front of body. pelvis rotated. one side of the back is extremly protruded than the ot her. she said yes. you have most likley a conversion disorder. meaning it's all in my head. i asked her if i had created my one leg being an inch longer than the other. yes.
of course this was shocking, infuriating, etc since i had just gottten out of physical therapy and learned about what my body was doing.
i asked her if what has happened to my body is psycological as well. she said yes. i asked her about the change in my eyes in that they burn now from light and reaing. yes again. i said so i can just make my body back to normal.
that was it.
my body has rotated pelvic, right shoulder is dropped, one side of back is way more pronounced. the pt had no idea what was going on with it.
it seems that from what i know the people that do believe my situation find it utterly puzzling and not normal. these being the physiatrists / rehab people for brain & stroke and all other doctors who have no idea what has / is happening.
i can not stand still without swaying and my legs kind of move on there own when i stand still. all neuro psych, speech tests i have had severe trouble with.
this is the second neuro person i have seen.
they have taken multiple blood tests that show up negative. my ct-scan showed nothing as did the mri. that was what the neuro doc said yesterday basically. your mri is fine.
should i just take there word for it and somehow move on. because of the shape of my body my left knee's miniscus isi now ripped. i am no longer the same person in my head.
but who do i see now? i do not want to go back to a neuro. at stanford they kept me for three hours tole me i had no diseasse and that was it. i then returned to stanford phsyiatry and they apologized.
what should i do? i would at least like to see someone about my body since it is only getting worse.
thank you sorry so long
thank you sorry this is long long.
i included a picture that was taken close to a year after hit by a car. all this change in body happened post accident
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