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Old 10-27-2010, 09:54 PM #1
acraig87 acraig87 is offline
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Join Date: Oct 2010
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10 yr Member
acraig87 acraig87 is offline
New Member
 
Join Date: Oct 2010
Posts: 2
10 yr Member
Default Any ideas about this MS like problem?

my girlfriend has been battling a neurological problem for the last 3 years

it began in march 2008 where my girlfriend recieved twinrax vaccine for hep a and b as we were going south for vacation. A day before we left she was losing vision in her eye where we thought she had burnt her retna as the emerge doctor suggested from tanning and said not to worry about it. 3 days into our trip we are flying home because she was entirely blind our of her eye, it had swollen so that it was crooked as well: optic neuritis #1

she has since had optic neuritis twice in the left eye and three times in the right to date.

she has also lost her bladder on episode where she was unable to use the washroom

she has lost sensation in parts of her body; but normally stays to one side of her body the right or left. she has lost her face, her arms, restless legs, numbing feeling in extremities etc.

she crashed her car because her hand felt like it was going to explode and she had an anxiety attack and blacked out.

she had an attack where her entire right side of her body went numb and had trouble breathing

to date diagnosis:

she has had every bit of bloodwork known to man all of which came to nothing, she had a skin biopsy on her butt, she has had 12 MRI's all of which were perfectly normal. She has had a lumbar puncture which was also perfectly fine. In all 12 mri no lesions on the brain therefore her neurologist will not diagnose with MS

every episode she has she is treated with 1 gram of solumedroyl (steroids) and it would remedy the situation for about a month. Everyone month she would have another episode.

UNTIL her doctor decided to try a different treatment called plasma pheresis where her blood was cycled through a machine and had all of her plasma extracted and replaced with a human protein to create new plasma. Her neurologist believed her to have post vaccination central nervous system inflammation from twinrax the hepatitous vaccine. He felt that by getting rid of her antibodies that were created by the vaccine she would not have the episodes. what a terrible procedure this was as she had a large stint go into her neck into her right atrium of her heart where tubes remained hanging from her neck for a week while she had this treatment done over 5 days.

5 months go by and she has 0 incidents, NO EPISIODES we thought we had beat it, we thought it was the vaccine until two months ago her face had went numb and we were hoping it was allergies or something non related however it was treated with steriods and went away. two months later last week she gets optic neuritis again, MRI shows shes fine. her doctor wishes her to do the plasma pheresis as it seemed to slow the frequency of attacks down and feels if she does it a couple more times she will be hopefully fixed.

she has seen blood specialists, infectious disease specialists, 4 neurologists, and even one of those wierd doctors whos into this big book of metals and vitamins and herbal **** that is supposed to fix her as well.

we have exercised every avenue here in new brunswick, nova scotia and the maritimes. We are hoping to be sent somewhere like toronto or montreal but ideally we would like to get to cleveland to the mayo clinic or whatever it is their famous neuro center is called.

any ideas as to how to get funding for this? any sites where doctors would be intrigued by this story and would like to sponsor her arrival and treatment for the greater good or knowledge of medicine? we wont have any coverage in the states as we are canadians on medicare.

any comments, ideas, opinions, concerns

let me know what you think, we are both 22 years old and this isnt the way its supposed to be right now.

thanks
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