dissapointment

well this is a long story to make a long story short i have brain mris once a year to image my pituitary. last nov. at ubc ms clinic the neuro had my brain mri faxed in he checked it and said that i did not have ms. did no further testing  anyways february 15 was back to see neuro he said because my mri failed to show lesions that i must have benign ms or the beginnings of ms.was back to see neuro opth.who ordered an evoked potentail visual one this came out normal.anyways was told by neuro that he would again look at my yearly pituiatry mri. well today was the day of my mri so i was kind of hoping they would find lesions to match my disability. when i went in i asked the technician about the strength of the machine and how ubc is going to look at this mri for lesions. she told me that this mri is not using ms protocol and that i could have multiple lesions and this would not show it i then told her this was the same imaging they used to undiagnose me in nov. now i am very frustrated with ubc you would think this top notch researcher who wrote several books on ms would know this i am very frustarted as i hoped it would show something so that i could start treatment after waiting all of this time.

[Karen99]

Ridiculous.  I am sorry this is such a crazy-making scenario.  

Err, he can't be that top notch if he believes your MS is benign given your present symptoms.

[HVAC]

I would see another MS Specialist. They did that you are going to have MS or Benign MS nonsense on me and it turned out I had PPMS for years.

Alex

[cainer]

oh  good  grief   i  feel  like  thumping  them  myself!!      get  their attention   you  are  paying  them!
   well  really    if  you  dont  they  wont-    hang  in there!!     take care     tick

[MarisaV]

I'm sorry you have to deal with this.

The benign MS is a silly diagnosis to begin with. I've seen some Journal articles use this term to refer to anyone that's not in a wheelchair, but personally, I don't think its a valid medical diagnosis, but a label used to categorize subjects in research.

You definitely need to keep on trying... and find another MS Specialist.

Take care.

Mar

[ack65]

Hi Mary,

You may want to see if you could you get a referral to the Fraser Health MS Clinic at Burnaby Hospital.  That is the only other clinic that specializes in ms in the lower mainland area.  Although, who knows if they would be any better.  I have been doing this merry-go-round for the last 4 years and am as frustrated as you but we must continue to fight and advocate for our health even when the system appears to be working against us every step of the way.  Take Care, Anna