On my first MRI 12 years ago, I had five brain lesions and one spinal lesion which all enhanced after injection of gadolinium dye. My next MRI's over the course of 5 years, showed no additional lesions, no enhancement, despite continuing symptoms. I was diagnosed with MS from the very first visit with my Neuro.
I left his care to went to another Neuro a year after and because my lesion load did not change, this Neuro "took away" my diagnosis of MS. This went on for three years.
I finally went to a teaching hospital in Virginia for neurological care. An LP was done at that time and repeat MRI's. The MRI's still had not changed, but I was positive for O bands in my CSF. Diagnosis of MS given again and I was started on DMD's. So I went 5 years without any treatment for the MS.
I stopped the DMD (Avonex) after three years due to continuing side-effects and went without any DMD's for the next two years. Due to moving, I started with a new Neurologist, who again repeated the MRI's. I now showed 12 lesions and still showed the same spinal lesion. I was started on Copaxone.
I recently had an MRI on a 3T for the first time, since I have been getting MRI's. It showed 23 lesions in the brain. My current Neuro thinks these lesions have been there for a while and just were not seen by a 1.5T MRI.
Should my diagnosis of MS been "taken away" so many years ago, bu Neuro #2 because I did not show an increase in lesions? I'd like to know your opinion, especially since we know what has happened in my brain since the time of that second Neuro. Do you "take away" a person's diagnosis, just because you do not see an increase in lesions on MRI over a period of time? Wouldn't you think that the MS is still "active?"
1. You want to know because it is a theoretical question.
2. You want to know for legal reasons.
I think that you can identify with me when I say that I will not answer #2 unless we were in a court of law.
For question #1 (which I believe is your true question), I am not convinced that with the spinbal lesion I would have removed the diagnosis, especially without a lumbra puncture, or spinal tap, (this is one of the few reasons why an LP is useful). It may be, however, that your brain MRI lesions were very non-specific and maybe that neurologist felt that the only "true" lesion was in the spinal cord and thus only represented "clinically isolated syndrome."
It should be clear that I am merely speculating on their thought process.
The 3 Tesla MRI is definitely picking up lesions that would not be seen on a 1.5 Tesla (and certainly not the wasteful "open" MRI some people unfortunately get) and the lesions were clearly not sprouting up overnight, so I do agree with the latest neurologist.
My question was indeed my personal medical history and as you surmised, I was not asking this question from a legal standpoint.
So I thank you for your wisdom. I always wanted to know what that spinal lesion may have meant and you have cleared that up for me. You have done me a tremendous favor because I have waited 12+ years for an answer. Something that I should have asked my own doctor, but failed to do. So I thank you.
I realize that it may have been my fault all along, for not submitting to an LP a long time ago, so the doctor and I could have maybe, cleared up this mystery.
Thank you so much, doctor. Have a great weekend...
Just as a side note....My very first MRI with and without contrast, showed that the Blood Brain Barrier (BBB) was breached. All of my lesions hightlighted and showed I was in an active attack. By the time the second Neuro came around, those lesions were still there and never highlighted again, while in his care.
He actually called the spinal lesion a "flow void," despite further MRI's showing that lesion in the exact same spot. I had one MRI that showed a small new lesion in the Parietal lobe and he called that an "artifact." Perhaps you can understand why I thought I needed to leave his care. I call him the Neuro with "blinders on."
It's a shame that I was not treated with any DMD's early on, but what will be, will be. I try to concentrate on my life with MS, as it is now and try not to look back. I've moved beyond those days and look forward to brighter days and pray for a cure to come along for all of us, soon. I hope it happens in my lifetime.
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