Hi all and thanks for reading,
I'm 43, diagnosed last june when I contracted ON. My mri showed over 70 lesions and at least 9 black holes. I had in fact complained over the 3 years before that of numbness and tingling but was basically dismissed as a hypochondriac I guess?
I went on rebif. My next mri in sept. showed basically no change except no gd enhancing. Also in august I went on 50,000 or 15,000 units of vit D twice a week as my vit d count was around 7. I went off rebif and vit d in nov and started tysabri in Jan of this year.
My next mri was 2 weeks ago which said I had 30-40 lesions. And fewer black holes but the dr reported that it might be bc of different technique. But the 30-40 lesions was certain.
I guess I'm still confused at how many lesions I have and how I could have reduced the number so drastically and which therapy was it? It looks like the rebif was ineffective which leaves vit d, tysabri, or just the winter months. I'm also wondering if they are still there but smaller and undetectable w/ a 1.5 T machine. My neuro said last september that I probably have many more undetected.
Does anyone have as many lesions as this? Is this uncommon or just less frequent? And it seems strange to be so asymptomatic although of course I'm incredibly grateful even though I realize the neuroplasticity which is responsible could crumble like a house of cards as soon as some thresh-hold of damage is reached. But thank god there's always that unpredictable nature of ms to keep me from believing that's a certainty. But hopefully the research on neuro-regeneration will result in some sort of therapy in the coming years.
This is long and filled with so many questions I apologize. I'm just finally emerging from denial and avoidance and am in search of some understanding. My neuro seemed un-interested in the reduction and didn't offer any explanation. Thanks for reading and any comments you might have.
edit: ends up the radiologist was lazy. Subsequent mri showed no change.
Last edited by sardi
on Tue May 13, 2014 7:19 pm, edited 2 times in total.