Originally Posted by Bearygood

What a day. A looong day. It usually takes time to get through the appointment but due to a fire last week her office was jammed. As such, she had not yet had time to review my films, only the report . We will discuss it more next week by phone but essentially, the scoop so far is what we thought. The new lesion was termed a "black hole" because axonal damage was evident. She did point out that even with this new lesion that I am still essentially asymptomatic and they suspect I've had MS for decades and by the time I'd been dxed I already had plenty of lesions and that in fact, there may have been prior axonal damage. (Something to ask the specialist about.) She agrees the new lesion is not good news but is also a little bit of the "treat the patient, not the MRI" train of thought that many of us share.

She had reluctantly admitted to me when I was originally dxed and made it clear that it was just her own personal thought (I pressed), that she was no longer as sure of the effectiveness of the DMDs as she used to be. BUT she suspects that if this happened and I had been on a DMD, my MS specialist would have put me on a different drug. SO -- this confuses me about the other "black hole" person I mentioned who is still on Rebif and "doing well". Anyway, I will hopefully find out more when I see the MS specialist. So that was the big decision today, that I will go back to him.

More on my eye follow-up later or maybe in a separate thread. Interesting info. so far but I won't have the my OCT follow-up results until next week. Oh, and some good news about the brain is that she confirmed that the report stated some remyelination in other areas. She's going to give me more feedback which should be helpful to have before I go back to the specialist.

So more to come on the saga of the back hole at a later date...