Okay, so I've apparently joined the "black hole" club.
 

I'm going with the "treat the patient, not the MRI" attitude here -- I feel okay! Still, it was not what I wanted to see on the report. Non-enhancing 8x13 mm in the right posterior frontal lobe. So from what I understand this is is permanent axonal damage, correct? Other MS "evidence" was diminished although still clear. Yup, okay, I still have MS -- I get it!

My MS specialist has not been very helpful to me so it was my neuro-op who actually ordered the brain MRI (in addition to the MRI of my orbits). I see her tomorrow so I will discuss this with her then.

Just a note about ON -- I still do consider myself very lucky but the radiologist report does confirm some atrophy although the good news is that it's stable.

Darn confusing disease! It's almost crazy that you can feel pretty much okay when these things are happening in your brain! I am very thankful that I DO feel okay -- I don't take it for granted at all. BUT -- it's still a puzzler!!!

So please tell me what you know about black holes. I will do a search on the board as well.

And lastly, as I wrote in the newest vitamin D thread, I do find it pretty interesting that I was stable for 2 years since dx and my D levels were normal during that time but I am now deficient -- and have this new lesion which they say is actually a black hole.

I'm interested in what everyone has to say about the *Black hole* thing. Are you saying that any non enhancing lesion is called such, like a slang term?

Also, I'm not up on the Vit D/ms relationship. I had read, way back, that there was some talk of a link between Vit D deficiency and people developing ms, but not having low levels and relapsing or having more lesions. Makes sense though.


I only read up on it then because as a baby I was dx'd with Ricketts - genetic Vit D deficiency.

Here is some good info on T1 black holes.

http://brain.oxfordjournals.org/cgi/...ull/126/8/1782

You remain positive and clear in your thought which is good.
I don't think there are many definitive answers to this hateful disease.
I appreciate your vit D info which is interesting but don't know (and chose not to) much about black holes and mri magic. I hope you get the answers that you search for. :hug:

Beautiful Horse, Pud's..:)

Why thank you !!
That's Rob a Dob. My hero.

Re: black holes, no -- any lesion can be enhancing (active) or non-enhancing, denoting new activity or not. I never really got a definitive answer on this but I believe that the period of time in which a lesion stays enhanced is roughly about 6 weeks. So in other words, at some point in the last 15 months I had an active lesion -- saying this because it's a new one. (At least according to this report.)

I had previously thought black holes were just that, like a merging of lesions together creating the hole. I didn't realize they could be lesions unto themselves, depending on how they present (not just demyelinating but indicative of axonal damage). So because of that I was surprised that it specifically said it wasn't enhanced -- didn't know that black holes could be! Sally's info. confirms the axonal damage. I'll hopefully gain some more insight from tomorrow's appointment and then decide whether or not I'm going to go back to the MS specialist this year.

Re: vitamin D (specifically D3 aka cholecalciferol) -- oh yes, there is tons of info. There's been a big surge of news on it in the last year and a half or so but I stumbled upon some interesting stuff early about D3 early on and started taking it. At the risk of being redundant, I'd suggest you start by doing a search for the previous threads in this forum -- lots of good info. Essentially, D3 functions in the body more as a hormone than a vitamin, there is evidence that deficiency is higher within the MS community and among other things, D3 helps regulate the immune system.

I also read somewhere (think I may have bookmarked it) that the blacker the black hole is, the bigger the extent of axonal damage. So gee, I wonder how black my black hole is! Maybe since they wrote it quotes ("black hole") it's just dark grayish. ;)

Yes, a black hole denotes axonal damage and is permanent. Not a good thing. The interesting (or just possibly confusing) thing here is supposedly this is a brand new lesion that they're immediately referring to as a black hole. Perhaps it was a small lesion that wasn't detected before? Who knows...

Last MRI was at the end of '07, all stable from when I was first dxed. (I had previously written 15 months so may ago so I guess that black hole has affected my ability to count! :p)

I am thankful for any additional information here and I really hope my neuro-op can shed some more light. A while ago I had written a thread that asked about the nature of progression -- another confusing thing is about what doctors consider normal or slow progression. Another unanswered question. I mean, can any of us really expect to NEVER see something additional on our MRI? Is that really realistic for a "progressive" disease?

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..:eek:..It would be nice if this freakin' disease would follow some kind of rules. It would be a little easier to understand.:hug:

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. :grouphug:

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

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! :eek:

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.