black hole on MRI

[Temagami]

Got confirmation of my first T1 hole yesterday. Neuro has submitted the paperwork to start Gilenya. (Have 20 other lesions that are not holes).

Should I be scared/freaking out about a T1 hole? I see it as a permanent loss of brain tissue- that scares the you know what out of me. Yet, I am functioning well and at this point only seem to have a broken internal thermostat as my main issue.
Anyone else in the black hole situation?

Been on Copaxone for almost a year.

[poohb3ar]

hi temagemi,
sorry you're having to go through this.
personally, i never had a hole at all.(well, not like you are talking about. i do have a hole in my skull where they removed a section out because a benign tumor was attached to it)
but try not to freak out about the lesions and holes and such. some people have a lot of lesions with very little sxs and others have only 1 or 2 and a whole bunch of sxs.

what does your neuro say? is he all upset about it? we all have many conditions with MS that are manageable, but sound really terrible when you know the technical stuff.

sometimes i think too much info is just as bad as not enough.
if you feel fine, relax and enjoy and just follow your drs orders.

i'm sure somebody here knows about this. MSW has some wonderful, knowledgable and loving people wanting to help each other.

sorry i can't give you any facts, but i can pray that you will be okay.

take care and God bless ya!

[deb46]

I have a black hole. Dr didn't say much about it. Lots of people with ms do. Have had it for years. Don't know what part of the brain it is in so don't know what part of my body it would affect. Try not to be too upset about it....hugs to you!!

[dm0329]

Unfortunately, I have many T1 (black holes) and T2 lesions, but I still "look so good" but now I really "feel my MS daily" (extreme fatigue, cognitive dysfunction, bladder issues, bad balance, muscle spacticity, etc.). But, I still wonder about the significance of black holes.

I was dx 18 years ago (mid-twenties) started Avonex 3 years after dx; this September will be my 15-year anniversary of starting Avonex. I never thought I could give myself a shot (huge needle weenie) and the side-effects really impacted my life the first 3 months.

But, the scare of my follow-up MRI 3 years after dx, scared me. I had significant "silent progression" and started Avonex. Back then, only Betaseron was dispensed in a lottery. IMHO, thankful for DMD's. Treat early; treat aggressive indeed!

My neuro talks about "how significant" my damage is as reflected on my MRI's but Avonex has kept my MRI's stable. I've had a few mild flares, but my MS has been mostly "stable."

But, the damage from the early years without treatment have slowly caught up with me. Now, in my mid-40's I feel MS daily. But, nearly twenties years later, I am soooo thankful for my weekly pokes.

What do many black holes and a high lesion load suggest? An aggressive course. . .have I missed the bullet with Avonex? *cross fingers*

So. . .T1 v T2? What's the implication?

[Dulcinea714]

My docs never said a word to me about black holes, but I had to get my complete medical records to file for disability retirement. I read through the paperwork and saw that MRIs showed black holes.

I figured it was just medical language to describe lesions, but this makes me want to ask the doc about it. I was DXed in July 2009 and the docs says it is amazing

I can do what I do, only a few lesions in the brain, but my spinal cord is a mess, I have seen the MRIs.
Hoping someone else can shed light on these black holes.

[dck696]

I have two or three black holes, and my MS specialist just generally said they are areas of brain tissue that are dead and can never be restored. He showed them to me on my MRI. I don't know the ramifications of them.

My son is a physics/astronomy major at Vanderbilt University, and I like to joke with him when he discusses the black holes in space and tell him he's got my permission to freely discuss that I have some of them myself!