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

Hi acraig,

Welcome to NeuroTalk!

First, allow me to point out we are not in the medical profession but victims, I mean patients of MS or related yet undiagnosed disorders.

Having read your journey so far there may be several things going on with your girlfriend above and beyond possible MS or vaccine toxicity reactions. I agree you would obtain a higher level of medical evaluation in the states, especially at the Cleveland Clinic, Mayo Clinic, John's Hopkins, etc. The fact that you are Canadian does present serious financial challenges.

I would recommend you attempt contacting a highly regarded specialist at the Cleveland Clinic sending them the data on her case. They may make a decision to go ahead and see her at a reduced or waived cost to you. Her case is challenging and highly complex. Specialists love those kinds of challenges. It sounds as if you have pretty much exhausted the Canadian opportunities unless I missed something and you haven't yet been to Toronto or Montreal for a higher level of evaluation at a teaching hospital.

Possibly contacting your local MS Society and linking to a US MS Society office in Cleveland may be of assistance.

Of note, it is not unusual for blood labs, MRIs, and LP's to all be negative especially in the early stages of a disease. Doctors like to have the organic results jump out at them so they can diagnose before the next commercial, like on House or ER. With many of us that is not the case. My situation took a full 10 years to obtain a firm diagnosis after too many tests, 2nd and 3rd opinions, rapid progressive disability. In the end, who cares what they call it, there is still no treatment or cure in my case and the prognosis is terminal. Such is life.

I wish you good luck and please keep us informed of your progress.

As with any country, if you feel you are being dimissed or treated badly by any MD, PLEASE petition to be referred to a new one. There are good and bad MDs in every country, and many MDs are overwhelmed with over flowing patients, and simply dont have the time to slow down, and take the time required to do specialized tests for special patients. They do the basics and then move on. Can you get to a better MD or has the Canadian system locked you into this doctor?

If you can travel and afford the USA route, you will find many more choices, and many more avenues to travel, but...they cost money. Yes, we have awesome health care, but we pay for it. Even we find some MDs are dismissive, and uncaring, and are not hearing us.

I hope you find the answers you seek.

i had similar symptoms due to a tear in the membrane of the inner ear called a perilymph fistula...my tear was so large it leaked CSF (spinal fluid) your GF's symptoms sounds identical to mine only i was sentitive to sound and my sensory was distored due to the ear/vestibular issue, i would look down this path...most doctors don't have a clue about it so you have to be pushy and do your own research, best of luck