A Black Hole Beary? So THAT'S what that terrible sucking sound was (sorry..kidding)..
What I know about them is pretty much what Sally posted..More severe X infinity than just your average lesion. You know they dx'd me as progressive at first since I had never had any relapses, but then an MRI showed new lesions (even though I still hadn't had a relapse as far as I knew), and was told it was possible to have "silent" relapses. Then, for the first time, I had the real thing this past winter....It would be nice if this freakin' disease would follow some kind of rules. It would be a little easier to understand.

No problem about the humor. What else do we have?

Yup, it would be nice if the disease had rules -- and also if our doctors were on the same page because a lot of the time they sure don't seem to be. I can't be sure but I think that my MS specialist would never refer to disease activity as a silent relapse. To be honest, sometimes I think the researchers and doctors would do very well to get all of us in a room and LISTEN to what we think and the questions we have -- as well as the theories, no matter how absurd they may be. This disease is frustrating for so many reasons and one of them is that our doctors aren't even all on the same page!

Slight tangent -- I haven't been around lately but I'm guessing the latest theory about MS being a vascular and not autoimmune disease was posted. Actually, very interesting theory but all of the information I've accumulated in this brain of mine makes me feel just dizzy. I'm sure many of you feel the same way.

Anyway, I'll keep you all posted on what I find out. Honestly, I know this is not good but I know it's also not freakishly uncommon. The only other cyber MS person I know who showed a black hole on her last MRI is on Rebif and and her doctor still feels that the drug is working for her. So confusing. In the meantime, I've been thinking about what I've been doing differently in the last year and come up with quite a few things. Of course I can't swear that these things made a difference but they're still good to think about and I feel I need to be more diligent.

Polar, I have to read more about what you went through. I didn'It realize that you hadn't had a real relapse before. Are you OK now?

I haven't been able to be around very much but I really think about everyone here on the board even when I'm not.

Ok whew. They found that a brain still exists up there. I was worried you'd made it into the new Star Trek

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...

Hello
I am sorry to hear what is going on. You've had trouble with your eye? More ON?

LA

Hi Bearygood. I'm a member of the black hole club too! Apparently I had a handful of them along with some regular lesions when I was diagnosed almost 2 years ago. But I have had minimal if no MS symptoms since then and no relapses. I was quickly diagnosed with O.N./dizziness/minor cognitive stuff but it was so mild the neuro told me I was his healthiest patient in the hospital while getting IV steroids. I'm on Tysabri, about to have #12 and another MRI. No change at #6 on the MRI. Actually, I wasn't on DMD's for 6 months at the beginning and no changes either. So I am living proof that you can have black holes and really no clinical symptoms. I hate the sound of "black hole" though. Why can't they just call them "old lesions?!" The neuro that I saw at the Mayo Clinic scared the carp out of me and told me I needed to be on the more powerful MS meds because it didn't look like my brain was healing (hence black holes). They do scare me a lot but I try not to think about them in my brain. I also try not to read about them too much online either because then then I really get freaked out!

Sounds like you have a good neuro, glad you got the info you asked for..I'm doing fine. I never had a relapse before (that I knew of), and would be thrilled never to go thru THAT again..It started the end of November and went thru the beginning of February. Swallowed mega steroids and I'm all better now. Keep us posted on what you learn!

Darn! What's with doctors offices getting behind/packed up due to fires?

(same thing happened to me, only that equated to a 2 month vacation for my doctors lol).

I have quite a few "black holes."

What is that old saying? "I need this like I need a hole in my head." Has anyone heard of that saying?

very true of ms.