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General Questions and Answers For learning, sharing your experience, and exchanging information about Multiple Sclerosis. Please discuss medications in the Medications forum, and natural supplements in Tara's forum.

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  #1  
Old 12-21-2011, 08:36 PM
penkalet penkalet is offline
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How many brain lesions on average do we have?

I just got my third year MRI and they compared and sized all my lesions to my 2009 MRI.

My first MRI in 2009 during my first attack (DX with RR) showed 60 lesions on the brain and 5 on the spine.

My second MRI in 2010 was of poor quality and was kind of worthless and didnít reveal any new lesions.

The third MRI November 2011, 8 new lesions were found compared to the 2009 MRI but no active ones.

I am 64 years old and never had a problem before so I guess I accumulated most of the 60 lesions before my DX without knowing it.

68 lesions (from 2 to 11 mm) it almost looks like Swiss cheese inside my brain!

My big question is: How bad is this?

Please let me know many lesions you have yourself and how many years you have MS.
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  #2  
Old 12-21-2011, 09:17 PM
owlnona owlnona is offline
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Hi, welcome I've had this MonSter for 11yrs now. Thats how long I've been DX. My Dr. thinks I've had it much lo
nger.I don't know the number of lesions I have, I do know they are both in my brain & my spine. It's my right side that is affected my hand, leg & foot. Also my bladder,I can't pee (sorry) I have to self cath.
I'm on Rebif & it works well for me. I use a Rollator at home ( rolling walkerw/ seat) & a wheelchair when out.
The thing about MS is it attacks everyone different, It not so much about how mant lesions you have but where they are in your brain or spine.
I pray you have a Blessed Christmas, Nona Judy
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  #3  
Old 12-21-2011, 11:37 PM
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meeegun meeegun is offline
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i have about 12--six in my brain and 6 in my spinal cord. i was just diagnosed and like you, my neuro thinks i have had this for much longer than my dx. i am 31 years old.
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  #4  
Old 12-22-2011, 07:15 AM
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jifr jifr is offline
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Wow. That sure sounds like a lot. But, you've probably heard that lesion load doesn't necessarily equate to the degree of your disability.

Do you have any so called "black holes"?

I have both brain and spinal lesions. My spinal lesions are more significant. While the neuros always say that you can't equate brain lesions with symptoms - they almost always equate the symptoms I have with specific lesions in my C or T spine. ::shrug::

I hope you're doing okay.
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  #5  
Old 12-22-2011, 08:20 AM
cosake cosake is offline
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Last MRI a few months ago I had 6 lesions.

I had 4 when diagnosed in January 2010. After a flare up in May 2011 an MRI showed 2 new lesions, for a total of 6. I turned 40 in June 2011.

I was not taking any medications prior to May 2011 except for a 10-week stint of Betaseron started in August 2010 that gave me serious side effects.

I've now been on Copaxone since August 2011.

I have heard that lesion load is not as critical as lesion location. So someone with alot less lesions could have more serious symptoms than you based on their location.
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  #6  
Old 12-22-2011, 08:49 AM
penkalet penkalet is offline
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Thank you for your responses

jifr: No mention about black holes.!

Yes, every case is different. My Sx are quite mild for that number of lesions. Walking trough mud and multitasking are my main challenges.

Why I am asking those questions is because my neuro mention to maybe switch to TY. I am on Copaxone and I don't feel that I am bad enough to change.
So we decide to have an other MRI in April and go from there.
Merry X every one.
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  #7  
Old 12-22-2011, 11:38 AM
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Mamabug Mamabug is offline
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Penk --

At my first MRI (in 2002), following my first flare, which had fairly major symptoms that landed me in the ER, I had 3 lesions. Several months later, I think I had about 25. Several years later, I had "too many to count". I don't even ask anymore.

Regarding your doctor's recommendation to switch from Copaxone to Tysabri, I'd want more info than just the number of lesions. As others have said, the number of lesions is not terribly important. It is more important where the lesions are located because that affects your symptoms.

Are your symptoms progressing?/Are they getting worse over time? Slowly, or quickly? How "out of control" is your MS? Do you have flares more frequently than once a year? (That may be a sign that your current med is not working effectively.)

I'd ask more questions.

~ Faith
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MSWorld Volunteer -- Moderator since JUN2012

Symptoms in JAN02
Dx in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable" stroke and "probable" CNS dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
.

- Betaseron NOV03-AUG08; Copaxone SEPT08-present
- Began receiving SSDI / LTD NOV08.
No longer employed. I volunteer in a variety of capacities in my church and community.
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  #8  
Old 12-22-2011, 07:20 PM
penkalet penkalet is offline
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Thank you mama, you make me feel better.

I am pretty stable now and I am going to wait and see before switching med!.
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  #9  
Old 12-22-2011, 09:24 PM
chalknpens chalknpens is offline
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I have "innumerable" lesions on my brain (I asked my neurologist, and she said hundreds, probably. I have some on my upper and mid spine as well. I have black holes, and brain atrophy.

They call my MS "benign RRMS." I don't relapse and I don't remit. What I have I keep. I started the DMD injections right after diagnosis (at the age of 57, probably decades later than my first symptoms but no time to go looking for trouble.)

I regret having started ... things got worse instead of better, depression deepened rather than 'slowed', and energy plummeted. I had to leave teaching, a job I loved.

I stopped the injections two months ago, and am starting to feel like myself again. They say the improvement is all in my head. Well of course it is, that's where they said they saw innumerable lesions.

I've written a book, and it is on Amazon.com, titled Multiple Sclerosis, an Enigma.
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  #10  
Old 12-23-2011, 09:26 PM
penkalet penkalet is offline
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Chalk,

Whaaa! your story is interesting.

I just order your book.

Every body is so different. We try to anticipate our future but no chance at that, will have to take what come to us.!

I am wondering if people like us that have been diagnosed late 50 or in there 60 have a different course of events?.

Thanks to respond.
Alain
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  #11  
Old 12-25-2011, 11:40 PM
southernms southernms is offline
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I have 2 lesions on my spine, but i've never had one on the brain. Every year they scan my brain to see if I have any activity and it comes back clear. god willing it will continue to stay clear.
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  #12  
Old 12-26-2011, 02:19 AM
Thinkimjob Thinkimjob is offline
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Really don't know, and don't really want to know.
The thought of having a Swiss cheese brain is not a nice one.
I would like to know whether lots of people have lesions, but never have any reason to have a MRI, so never find out.
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  #13  
Old 12-26-2011, 08:34 AM
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Mamabug Mamabug is offline
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Not sure, but I think yes? Isn't it a normal part of aging? I suspect that the typical MS lesions, though, might "look different", possibly in location and shape, than other lesions.

~ Faith
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Faith
MSWorld Volunteer -- Moderator since JUN2012

Symptoms in JAN02
Dx in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable" stroke and "probable" CNS dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
.

- Betaseron NOV03-AUG08; Copaxone SEPT08-present
- Began receiving SSDI / LTD NOV08.
No longer employed. I volunteer in a variety of capacities in my church and community.
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  #14  
Old 12-26-2011, 08:49 AM
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Enigma1019 Enigma1019 is offline
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Chalk,

I love the name of your book!
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  #15  
Old 12-26-2011, 09:10 AM
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kingrex kingrex is offline
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Regarding lesion "count" - my guess is that the number you're quoted (and I'm guessing it's the neurologist who is giving out numbers, because radiology reports rarely give an actual count, unless it's only a few) is very often exaggerated due to technical factors. If you have a 6 mm plaque, for example, it will probably be seen on two different slices (slice = picture). The same thing could happen with a 4 mm plaque, depending on where it's located.

An MR image is an image of the content of a three-dimensional slice of tissue. Every type of tissue (e.g., white matter, gray matter, CSF, bone marrow, demyelinated lesion, etc.) has a fairly unique appearance on a given MRI sequence. The imager assigns a single unit of brightness to each voxel, which is a three-dimensional area of tissue within the image slice. If the voxel is large enough to include two or more different types of tissue, then the brightness assigned to that voxel will be an average of the tissues within it. The way to combat this phenomenon, known as partial volume averaging, is to use the thinnest possible slice thickness and the smallest pixel size available. In reality, there is a limit to how thin and fine we can practically image, so there is always the potential for some averaging.

None of this makes much difference to an MS patient, unless you're hell-bent on counting every single lesion like a Treasury agent. But when I read about someone having 60 lesions in the brain, I have to believe that this is an over-accounting of what's actually there. I'm sure there are cases, but most MS patients have nowhere near that number.


rex
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