November 12, 2020
2 MRI'S met criteria...lesions in all 4 MS locations... dozens of debilitating symptoms...3 TIA'S...several replapses...
but my doctors say not MS that lesions to small
November 14, 2020
I am so sorry you are still awaiting a diagnosis, @Hopeless. I mean, I am assuming that. Did your physicians diagnose you with something besides MS? Have you had other testing to confirm or rule out MS? Usually, physicians use a battery of tests to make a diagnosis, including a physical exam, VEP, bloodwork, and sometimes a lumbar puncture. You can read more about those tests here -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis/. I would hope that they are continuing to work with you to find a diagnosis and offer viable treatment options. I am not a physician, nor an expert in MS, so I cannot offer much insight into your MRI results. But, I know it must be very frustrating to still be experiencing symptoms and to be told that no, you don't have MS. You always have the right to seek a second (or third!) opinion. Best, Erin, MultipleSclerosis.net Team Member.
February 20, 2021
@hopeless please find another MS doctor (or Neuro that specializes in MS).
I have fired more doctors than I can count, including "MS specialist" at one of the best MS centers in ATL!
Some times their egos get the best of them and the feel like they are the end all be all. It's hilarious to me that the motto of the MS world is "not two Ms'ers are the same, like snowflakes" yet if you come in with something that is not what they consider clear cut MS they are quick to say it is not. I have a very weird case (as my Neuro says) with 1 small lesion of the brain, positive LP (times 4...just to make sure I guess???) and a lot of symptoms (which does not equal "normal MS"). I should, by the McDonald criteria, have more than 1 lesion, especially with all of my symptoms...that being said...my friend that I grew up with (literally across the street) has MS (and lupus) and they stopped counting after 20+ lesions in her brain. She is working and walking and talking and needs no cane or any devices (unlike myself). To me, she doesn't meet the criteria of having MS if you look at it that way. I mean she should be in a wheelchair or at the very least need assistance and unable to work. So why are the MS Specialist so quick dismiss?
I've been called a liar, over exaggerating, it's all in my head, puzzling, and it's just depression. My Neuro finally put me through so many tests (blood, MRI, LP) to rule out anything else she could think of and came back with PPMS due to my symptoms that are progressing and my positive LP and 1 lesion.
I have one very smart doctor (who is a Rheumatoid doc...the only smart doc so far that I've found) tell me that the medical world (tests as in blood, MRI, CT's) have not caught up to our diseases. Basically, we have these diseases but the tests are not smart enough to pick them up until they get to a certain point/criteria?? She is 99% positive I have Lupus but since my bloodwork has said no, she can't put it in my chart. She wants me to keep coming once a year to be tested that's how sure she is.
So I guess my very long point of this convo is...fire the docs you have and try another until they listen or give you answers you are satisfied with! Good luck!