Multiple Sclerosis (MS) Support Group
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OK. I went to my neuro last week for my one year checkup. Most of the news was good, but I would like your feedback on what my results were.
First a bit of background. I was diagnosed about 15 months ago while having my first "major" bout of MS. At that time I was given an MRI and it showed 28 brain lesions and 1 big spinal cord one. Also contrast showed seven brain lesions were active and the big spinal cord one was active. Three weeks after diagnosis, I started Rebif as my treatment for MS.
The MRI at my one-year mark shows three new lesions (one big one) and three "black holes". But contrast showed no active brain lesions and the spinal cord one is just slightly active. My neuro seemed pleased with the results but was unable to give me a definite answer as to whether the Rebif is working to his liking. I have to wait another year! His interpretation was that the Rebif takes up to 6 months to start working so the three new lesions could have been in this 6 month window before the Rebif kicked in.
What is your reaction to this? Also what are black holes? I have looked on google and the best answer I find is it is a dead area in my brain. Is this right?
Your help is much appreciated.
THANKS!
First a bit of background. I was diagnosed about 15 months ago while having my first "major" bout of MS. At that time I was given an MRI and it showed 28 brain lesions and 1 big spinal cord one. Also contrast showed seven brain lesions were active and the big spinal cord one was active. Three weeks after diagnosis, I started Rebif as my treatment for MS.
The MRI at my one-year mark shows three new lesions (one big one) and three "black holes". But contrast showed no active brain lesions and the spinal cord one is just slightly active. My neuro seemed pleased with the results but was unable to give me a definite answer as to whether the Rebif is working to his liking. I have to wait another year! His interpretation was that the Rebif takes up to 6 months to start working so the three new lesions could have been in this 6 month window before the Rebif kicked in.
What is your reaction to this? Also what are black holes? I have looked on google and the best answer I find is it is a dead area in my brain. Is this right?
Your help is much appreciated.
THANKS!
How did he become your neuro? I just just read stuff about black holes that I will message you my understanding of how they are--there are 3 types. Not sure how long people use Rebif before switching to something else. I used betaseron for 3 years before I switched, because betaseron was becoming ineffective for me. Only 1 active lesion, but many new inactive lesion and visibly declining function. I'm glad I switched.
Perhaps start another post questioning how long a person used a med before they switched and why did they switch? What did they switch from and to. That would be interesting.
A lear later I had another on and the were many new inactive lesions and one new active lesion and I was not doing as well on the neuro test in the office...thats why she switched me....so I don't have experience with the wait 2 years, but I did.
That's why I am interested you making that post for how long people waited before switching &
DAMN THIS COMPUTER, IT ALWAYS MAKES ME LATE!!!
Sounds like my Rebif is having similar results to your betaseron. I seem fairly stable, but have lots of fatigue. That seems to be my issue that I am left to deal with right now.
Any new lesions concern me especially while taking these stupid injections. I think I have treatment burnout. I will start a new discussion about switching treatments...
As promised I will tell you what I know about BH. I'm kind of tired right now, the infusion went good. After wards I called my mother who is like a tape recorder, complaining. That's what tired me out. I wonder if she know she is doing it. I think she complains about everything.
Black Holes..there are 3 kinds.
1.Acute BH are just active lesions that show dark on a T1 scan that is done without the dye. when dye is used the enhance, but are dark without the dye & are called Acute Black holes.
2.Persistent Black holes- these are dark spots on a T1 MRI with the dye. If they were an active lesion they would have enhanced. But the damage is more extensive than an enhanced active lesion. Acute Black hole is damage to the Myelin. A Persistent BH is damage to the axons. A dark spot on a T1 scan WITH the dye.
3.Chronic Black Holes is a Persistent Black Holes that have remained for at least 6 months and are thought to be permenant.
So if you had a Persistent Black hole a year ago and it is still there you would have a Chronic Black Hole and very likely a permanent loss of brain tissue. But if you did not have it a year ago, it still might be a Persistent Black Hole and still could heal.
The brain is highly plastic and will absorb these empty spaces. It causes the brain to shrink overall when a Black Hole is absorbed.
You can tell if the brain has shrunk by the distance between the brain and the skull. The soft spot on a baby's head is to allow the skull to grow to the size of the brain. If you look at a young persons MRI teens or 20's that's young to me comparatively.
There is less space between the brain and the skull the younger a person is. As we age,the brain shrinks normally and the space between the skull and the brain increases..In MS the rate of this brain tissue and brain shrinkage is twice the rate of a normal person.
Acute BH & Persistant BH holes might heal. Chronic BH's might be absorbed and disappear on the MRI, with an increased amount of distance between the brain and the skull. As with all things MS, it is uncertain which it will do.. Some Chronic BH may remain & some are absorbed after a period of time. Either way it is a loss of brain tissue.
Thats my understanding of BH.
I am glad your infusion went well!
Take care and stay healthy!