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    Old 08-11-2008, 08:42 AM   #1
    MSNik
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    update and a question

    Hey all. I just came back from my Neuro where he went over my MRI. Good news is that there are NO new lesions and nothing showing up on contrast...we spoke about Rebif, he thinks it is the best drug in the world for me, this is now 2 years of being on it, 2 years of regular MRIs and blood work and 2 years of no new developements! So, good, right?

    Then, he showed me my MRIs compared to 6 months ago, and pointed out something which has changed. He called them black holes and explained them to be brain tissue which is actually eaten, by the MS. He said previously there had been several lesions in that area, and I can see where they used to be (white). However, now they are black spots- and quite large. Almost a full cm in diameter. My doc laughs at me and tells me I have plenty of brain cells to spare and that this is normal MS thing, but I wonder about it. Has anyone else been told about black holes or why/how they develope and what the consequences are of them being there?

    He was adamant that this was not something to worry about, so Im trying not to, but figured someone here MIGHt have more to add on the subject.

    Other than that, another year of Rebif is in my future...we have graduated now to only having MRIs every year, intead of 6 months, and my blood work will now be 2x a year, instead of quarterly...thats all good.

    I also spoke to him at length about Chiro care, due to my disc issues and stenosis- he absolutely forbid me to try again, stating that the nerve damage is so severe, he wants NO ONE working on my back for ANY reason....he figures a Neuro-surgeon is eventually in my future, however, we arent going that route yet. He is going to continue to offer me steroid shots in my muscle in my back, for pain control- but doesnt expect this to get anything but worse over the next 3- years...
    thats my day...now, what do you all know about Black Holes??
    Hugs
    Nikki
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    Old 08-11-2008, 11:49 AM   #2
    jlbrow7
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    Re: update an a question- MSnik

    Nikki,

    This is what I know about brain problems.

    My last MRI showed quite alot of blackened areas and my neuro immediately had me go in for cognitive skills testing. He said the brain "activity" was very common with MS but that he wanted to be aggressive with it.

    End result is that I use an Exelon patch (it is used alot - I believe - for folks with Alzherimer's) every day. I call it my brain juice.

    I noticed immediately that I could concentrate better. My s-t memory is probably on a permanent vacation.

    My doc never used the term black hole so this might be different? I hope this helps.

    Last edited by jlbrow7; 08-11-2008 at 11:52 AM.

     
    Old 08-11-2008, 12:35 PM   #3
    MSNik
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    Re: update and a question

    Hi ya JLbrow. Thank you for sharing that information with me. I really dont know if its the same thing, or not- and he didnt suggest anything to do about it, nor was it clear if it is affecting my cognitive skills (I dont think so) but- its good to know. I will be seeing my MS specialist on Thursday of next week, he is not the one who ordered the test, but hes another "source" of info. Ill check with him and see what he has to say...but I appreciate your sharing of information.
    Hugs!
    Nikki
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    Old 08-11-2008, 12:40 PM   #4
    Snoopy61
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    Re: update and a question

    Black holes are where lesions were but it's now permanent axon damage. Black hole are not a good thing but, unfortunately common with MS. The more black holes the more chance of brain atrophy.

     
    Old 08-11-2008, 12:41 PM   #5
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    Re: update and a question

    Black holes absorb light...errrr Space!

    LOL, must be all those darn holes in my head At least I have a reason for my brain not working efficiently!

    Scabs, from the lesions, are absorbed by the body leaving scar behind. The scabs, once removed, would leave spaces or pockets in your brain. (insert standard I am not a doctor and this is what I understand ) If you have concerns, discussing them withyour neuro would be the best thing to do.

     
    Old 08-11-2008, 12:48 PM   #6
    MSNik
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    Re: update and a question

    Snoopy and Jayhawk, thanks. I think. Actually what you said, Snoopy does sound like what he was saying about how there were probably many lesions there to begin with, and they have now dissipated into black holes...he didnt seem the least bit worried about this; but I am! I do have another appt with my MS doc to discuss further and will- but thought Id try to find out what it was I was asking about in the meantime...
    Snoopy, brain atrophy- is that as horribly bad as it sounds?
    Interestingly enough, the radiologist makes no mention in the report of this, at all...
    thanks.
    Nikki
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    Last edited by MSNik; 08-11-2008 at 12:49 PM.

     
    Old 08-11-2008, 01:08 PM   #7
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    Re: update and a question

    It's definitely not a good thing, Nikki I'm a little suprised your neuro wasn't concerned about the black hole. As time progress and IF more black holes are found your brain actually shrinks (atrophy).

    Here is more on atrophy:
    [url]http://www.ninds.nih.gov/disorders/cerebral_atrophy/cerebral_atrophy.htm[/url]

     
    Old 08-11-2008, 01:13 PM   #8
    MSNik
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    Re: update and a question

    hi Snoopy. Read the link- again thank you for the info. But it did scare me. Fortunately at this time, I sufffer none of the conditions or symtoms listed, but knowing thats what happens, or could happen, isnt a pleasant thought!
    I wonder why my Neuro didnt seem concerned, and likewise, why the Radiologist made no note of it on the report? My neuro made it a point to show me where these 2 black holes are- and clearly identified that this is where there were previously a group of lesions (shown from the last MRI) but truly, didnt say a word about how this might affect me...I guess this is, like most MS things, a time will tell sort of scenario.
    Appreciate your help.
    Nikki
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    Old 08-11-2008, 01:55 PM   #9
    MSNik
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    Re: update and a question

    Snoopy, I just did some research on my own and found that up to 40% of all MS lesions can turn into black holes, on averate. There is some documentation that interferons can help to prevent this from happening. I just wonder if this phenomena is more common than our Neurologists talk to us about and thats why my neuro didnt make a big deal out of it! Its all very confusing and overwhelming...
    Nikki
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    Old 08-11-2008, 03:35 PM   #10
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    Re: update and a question

    First of all, Nikki, Congrats on your MRI!!

    I read somewhere that black holes (I could be totally wrong) happen when old lesions merge together. When I started Avonex, one of it's claims was that it "reduces brain shrinkage significantly" and that totally freaked me out. I'm going to read the link that was posted to learn more.

    But no new lesions is a good thing, and I hope you can focus on that! COngratulations!
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    Old 08-11-2008, 03:38 PM   #11
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    Re: update and a question

    Quote:
    Originally Posted by MSNik View Post
    Snoopy, I just did some research on my own and found that up to 40% of all MS lesions can turn into black holes, on averate. There is some documentation that interferons can help to prevent this from happening. I just wonder if this phenomena is more common than our Neurologists talk to us about and thats why my neuro didnt make a big deal out of it! Its all very confusing and overwhelming...
    Nikki
    Yes, what you found is correct. My concern for you is your on a DMD and still have black holes. If the DMD is supposed to prevent them then why are you getting them? Is the rebif not working as well as another DMD could or will it be a I don't know type of answer from your neuro.

    You just have to love the uncertainty of this disease....NOT

     
    Old 08-11-2008, 03:43 PM   #12
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    Re: update and a question

    Hi April. I just read an article which also talks about Rebif, and interferons in general, which help to prevent brain atrophy- so its probably very similar to what you read..
    Ive been reading up on this for the past few hours. It doesnt appear that this is anything that most of us wont experience at some point or another, and there is absolutely no reason to think that a black hole is going to change anything- its just a possiblity. But then, we all know that with MS, anything is possible, right?!

    My doc did explain it to me that when lesions get old, they eventually do rot, and when there is a cluster of them, its more likely that the scar tisue will literally rot the remaining Myelin and Axon....this is when the hole forms. Im not totally surprised to hear this, since my balance and some of my cognitive skills have been noticably worse over the summer. i figured it was heat induced, but it may be that its because of this....nevertheless, Rebif is doing what it is supposed to do. Preventing new lesions, showing NO new acitivity on the MRI, and basically I havent had a relapse in over a year...so YES, I can focus on that and be grateful that its working. Being that Ive been on Rebif 2 years this month, and that the first 6 months dont really count- its still building up in the bloodstream, I guess the next 6 months to a year will be more telling.

    im over the initial shock and will be seeing the MS specialist next week, Ill talk to him more about it. Its an easy subject to bring up, since its pretty clear on my MRIs that there are two nice sized black marks...

    thanks!!
    Nikki
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    Old 08-11-2008, 03:52 PM   #13
    MSNik
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    Re: update and a question

    Hi Snoopy. The interferons are designed primarily to stop MRI activity- stop new lesions from forming and to reduce relapses. That being said, we have to look at the whole picture. Ive been on Rebif 2 years this month. The first 6 months dont really count, as it is just building up in your blood stream. Before Rebif, I was averaging Optical Neuritis twice a year, and 2 additional relapses...since month 6 of Rebif, not one new symtom or relapse- nothing new has formed on the MRI and thats with and without contrast- my doctor thinks it is the perfect drug for me and working better than he could have hoped.
    To specifically answer your question about why are there still black holes- if I am understanding this correctly- when the scar tissue starts to rot, and this happens most often when there are clusters of lesions together, then the Myelin and Axons are completely done. Never to be repaired and never to regenerate...at this point, the brain tissue rots..this is what appears as a black hole on the MRI. Its not exactly that something NEW showed up as much as it is OLD lesions which have bascially bottomed out, with nothing (brain tissue) left to support them....this is kind of to be expected when you have the type of lesions that I have. While most people have 5 or 10 lesions, and can actually count them on the MRI, I have over 50 clusters and there is no way to count individual lesions...the good news is that when I started, pre-Rebif, so many of them were lit up with the contrast, now, there is nothing lit at all and no new lesions or clusters to be seen...meaning, the Rebif is working.

    I have called my Neuro since first writing this, and spoken to him- he assures me that what he sees on my MRi is NOT indicative of anything to be concerned about and that he is very pleased with the fact that I responded so well to the Exam he gave me (typical in depth Neurological exam) as well as the imaging..he said that if the blackness wasnt there, there would still be lesions showing, and either way, to expect anything to be really different would be expecting too much...he is also adamant that the number of lesions is NOT indicative of how the disease will progress or how I will feel in the future..he seems to think that Im in better shape then I think...

    I dont know if what im writing makes sense. You know an awful lot more about this then I do, but believe me when I say that Im reading everything I can get my hands on tongiht about this, and not really seeing that this is all that spectacular or unexpected..seems that just about all of us will at some point experience this..the idea is to prevent NEW lesions and thus prevent NEW black holes- the ones that were there prior to my dx theres not much I can do about...

    nikki
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    Old 08-11-2008, 04:12 PM   #14
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    Re: update and a question

    Hi Nikki,
    I thought you would not have a update on your MRI till the 14th of this month. I was surfing the posts and came across your update. CONGRATS!!!

     
    Old 08-11-2008, 05:41 PM   #15
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    Re: update and a question

    Hi, Nikki. What Snoopy wrote about black holes is correct. Her question was also valid because the DMDs are supposed to do all those things you talked about and also prevent black holes. I know you love Rebif but NONE of these drugs are guaranteed miracles. That's why the carefully chosen phrase used is to "slow progression" and not "stop progression". I've seen people who've gotten new lesions but still feel their DMD is working because they're getting them a reduced rate than before treatment. I think to a certain extent these things are relative AND of course, there is no definite way to know for sure if it's the drug at all or just the natural course of someone's MS. Were these axons on their way out before you started Rebif? I sure don't know the answer to that and maybe that's a question you should ask your MS specialist when you go in for your visit.

    The black holes are definitely not something we want but it doesn't mean it will definitely affect you adversely. Like lesions, it's possible for the holes to be in the more rewirable part of the brain. Please don't forget that how you FEEL is also very important. You are not alone -- I've come across a lot of people with holes in their brains! Don't fret.
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    Last edited by Bearygood; 08-11-2008 at 06:09 PM.

     
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