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Natalie8 04-20-2008 05:27 PM

types of MS lesions
 
Could someone explain to me what the difference is between T1 hyperintense, T2 hyperintense, and T1 hypointense lesions? I think I have this written down correctly. I'm trying to make sense of my MRI report. Which ones are gandolinium enhanced and which ones are black holes? I'm a bit confused.

Erin524 04-20-2008 05:49 PM

I think the T1 and T2 are just indicators of what intensity that the MRI is set for depending on whether you've been given Gadolinium or not.


Of course I could be wrong. I tried to Google for a definition, but couldnt really find anything that I understood that would explain it.

Victor H 04-20-2008 07:13 PM

Natalie,

This link may help:

http://www.radiologyassistant.nl/en/4556dea65db62

-Vic

Natalie8 04-20-2008 08:48 PM

Quote:

Originally Posted by Victor H (Post 262937)
Natalie,

This link may help:

http://www.radiologyassistant.nl/en/4556dea65db62

-Vic

Thanks Vic. I've seen that before. I understand where the lesions tend to cluster with MS but I'm trying to figure out what it means when it says I have "T1 hyperintensities." (along with other descriptions).

Natalie8 04-20-2008 09:02 PM

Okay, this is totally depressing.

http://www.healthfinder.gov/news/new...p?docID=607646

And another.

http://www.bio-medicine.org/medicine...ression-221-1/

They believe now that multiple T1 hyperintense lesions (which I apparently have) can be correlated with more "severe" MS as they put it, or secondary progressive.

Ugh. How could I have severe or SP MS if I've only had one clinically isolated episode of O.N??

Maybe I need to stop reading this stuff for awhile. It's freaking me out.

Erin524 04-20-2008 09:26 PM

Quote:

Originally Posted by Natalie8 (Post 263022)
Okay, this is totally depressing.

http://www.healthfinder.gov/news/new...p?docID=607646

And another.

http://www.bio-medicine.org/medicine...ression-221-1/

They believe now that multiple T1 hyperintense lesions (which I apparently have) can be correlated with more "severe" MS as they put it, or secondary progressive.

Ugh. How could I have severe or SP MS if I've only had one clinically isolated episode of O.N??

Maybe I need to stop reading this stuff for awhile. It's freaking me out.


Stop reading this stuff. It'll freak you out and drive you nuts. I did the exact same thing before I got diagnosed and had myself convinced that I was going to die at one point.

Stop researching MS and stuff on the internet. Read a Harry Potter book or learn how to crochet or something. Reading the research will just make you nuts.

beautytransforming 04-20-2008 09:32 PM

This is my understanding, and I will try and remember to ask my nuero tomorrow.

A T1 hyperintense in one that intensifies with contrast, meaning it is active or coming out of an active cycle. The T2 are newer, but not healed and the hypo ones are older and more healed up.

I'll do more research, and as I said, if I remember will ask my nero tomorrow!!

Don't give yourself something to worry about. Write your questions down, and ask.

Also, how many T1's does your mri say you have. Most RRMS have at least one!

Natalie8 04-20-2008 10:39 PM

Quote:

Originally Posted by beautytransforming (Post 263035)
This is my understanding, and I will try and remember to ask my nuero tomorrow.

A T1 hyperintense in one that intensifies with contrast, meaning it is active or coming out of an active cycle. The T2 are newer, but not healed and the hypo ones are older and more healed up.

I'll do more research, and as I said, if I remember will ask my nero tomorrow!!

Don't give yourself something to worry about. Write your questions down, and ask.

Also, how many T1's does your mri say you have. Most RRMS have at least one!

Well according to this study it says about 78% of all people have at least one T1 hyperintense lesion. But 71% of those with SPMS had multiple T1 hyperintense lesions and only 46% of RRMS have multiple T1 hyperintense lesions.

The Mayo clinic said I had a "significant amount of T1 hyperintensities" on the notes for the second visit. What the hell does significant mean? But on the notes for the first visit the doctor wrote the two MRIs done at home show
"T2 hyperintense lesions with decreased T1 hypotensity and actually several black holes. There were more than nine lesions in periventricular, subcortical as well as around the corpus callosum that were in the right orientation location to suggest demyelinating disease. Several of these were enhancing in the initial MRI." Basically I'm confused.

I think this line in another abstract scared me: "Hyperintense MS plaques on T1-weighted MR images are common and associated with brain atrophy, disability, and advancing disease; a hyperintense lesion may be a clinically relevant biomarker."

Anyhow, Erin is probably right. I'm just torturing myself by doing all this reading. It just escalates the anxiety. :(
I don't see the neuro for another month.

Natalie8 04-20-2008 10:46 PM

I find words in MRI reports like "significant," "several," "multiple" and "many" to be highly vague and hardly illuminating.

Erin524 04-20-2008 11:25 PM

Quote:

Originally Posted by Natalie8 (Post 263090)

Anyhow, Erin is probably right. I'm just torturing myself by doing all this reading. It just escalates the anxiety. :(
I don't see the neuro for another month.

So, instead of Googling MS stuff, look at all these cute pictures of Pug puppies instead. :)

Arent they cute? Guaranteed to take your mind off of serious stuff.

RedPenguins 04-20-2008 11:42 PM

Freaked out, too!
 
Hey Natalie,

I can see why reading that article would make you freaked out - it isn't making me feel too good either!

I remember reading my report and then asking both neuros what exactly was meant by "multiple" and "several" - and the only response they could give me was that the radiologist stops counting at a certain point... That sounds awful to me (one that they stop counting, and two, that I had several and multiple and didn't know exactly how many).

Of course, I had to pull out my MRI results and re-read them (not that it made any sense to me 3 months ago). My report talks a lot about High T2 and FLAIR signal intensity. I researched it...but of course nothing out there really explains any of it in full clarity, in my opinion. Then again, my vision sucks and my head hurts so much, that probably I couldn't make sense out of a **** (oh, they put *s there - for the nickname for Richard) and Jane story!

And while I read the report, I just get stuck every time I get to the lines that say MS. I just freeze in place.

Okay, putting away report. Gearing up for next MRI, hopefully this week or early next (before my 2nd Tysabri on May 2).

I agree that reading and researching can drive one nuts....but I also can't help myself. Sometimes I try to distract...yet it is hard to sit back and knit and read HP when you see double, are dizzy, and your head hurts like heck!

~Keri

Natalie8 04-21-2008 12:01 AM

Quote:

Originally Posted by Erin524 (Post 263115)
So, instead of Googling MS stuff, look at all these cute pictures of Pug puppies instead. :)

Arent they cute? Guaranteed to take your mind off of serious stuff.

Puppies are much more fun to look at than old medical records. Very cute pugs. I've always wanted a great dane. Check out the dane puppies and adults here.

http://images.google.com/images?sour...=1&sa=N&tab=wi

These are some big *** dogs!!! Look at the "Redneck Great Dane Puppy" -- pure white...so strange! Although he looks pretty big to be a puppy.

Erin524 04-21-2008 12:09 AM

Quote:

Originally Posted by Natalie8 (Post 263131)
Puppies are much more fun to look at than old medical records. Very cute pugs. I've always wanted a great dane. Check out the dane puppies and adults here.

http://images.google.com/images?sour...=1&sa=N&tab=wi

These are some big *** dogs!!! Look at the "Redneck Great Dane Puppy" -- pure white...so strange! Although he looks pretty big to be a puppy.

I used to have a Bouvier des Flandres, named TinyMonsters. Those are big dogs too, not quite as large as a Great Dane tho, but still pretty huge.

I keep waffling back and forth on wanting another dog. I want one, but I think I have an allergy (my allergies all improved after Tiny died, and I had an allergic reaction when I tried to adopt a Yorkie 5 days after Tiny left us)

Then there's the whole fatigue part of MS that's also holding me back on a new dog.

My aunt's Pug just died last month, and she's considering getting a new one, and I'm kind of thinking of getting one from the same litter if we can find some.

I miss my dog, and I miss my aunt's dog. (both our dogs were best friends in the world, they even died on the same date, 2yrs apart)

Natalie8 04-21-2008 12:20 AM

Quote:

Originally Posted by RedPenguins (Post 263126)
Hey Natalie,

I can see why reading that article would make you freaked out - it isn't making me feel too good either!

I remember reading my report and then asking both neuros what exactly was meant by "multiple" and "several" - and the only response they could give me was that the radiologist stops counting at a certain point... That sounds awful to me (one that they stop counting, and two, that I had several and multiple and didn't know exactly how many).

Of course, I had to pull out my MRI results and re-read them (not that it made any sense to me 3 months ago). My report talks a lot about High T2 and FLAIR signal intensity. I researched it...but of course nothing out there really explains any of it in full clarity, in my opinion. Then again, my vision sucks and my head hurts so much, that probably I couldn't make sense out of a **** (oh, they put *s there - for the nickname for Richard) and Jane story!

And while I read the report, I just get stuck every time I get to the lines that say MS. I just freeze in place.

Okay, putting away report. Gearing up for next MRI, hopefully this week or early next (before my 2nd Tysabri on May 2).

I agree that reading and researching can drive one nuts....but I also can't help myself. Sometimes I try to distract...yet it is hard to sit back and knit and read HP when you see double, are dizzy, and your head hurts like heck!

~Keri


Hi Keri,

I'm sorry I freaked you out too with those articles!! :eek: I don't know why I went back to look at my MRI reports or why I was researching MS stuff again. Probably because I started panicking about what might happen if I can't tolerate the copaxone. It's making me feel kind of flu-like. Then what is next?? Interferons are out because of a history of depression (2 weeks of Rebif and I started getting massively depressed not to mention sick as a dog). Tysabri scares me. How are you doing on that? Did your first infusion go okay? I followed some of your threads and was glad to hear you finally got on it.

Yes, the whole "at some point we stop counting" REALLY scares you, doesn't it? Yeah, every time I see the word "multiple sclerosis" I get frozen too. They are such two ugly words. Why couldn't it have a better sounding name? Like C.B. for cotton balls? Or PBP for Pretty Brain Pattern?

I am also sorry you are feeling physically crappy too. I was going to say s**tty but they blocked out my previous use of (another word for donkey) so I figured that one wouldn't be okay either.

The first neurologist I saw who had to admit me into the hospital because my internist couldn't (and it was Friday and he was the only guy on call) was terrible. I dumped him right away. BUT...he did give one good piece of advice. He said not to go online and google about other people's experiences because everyone has a different course--no two cases are really alike--and there is no point in trying to scare yourself or compare. My MS therapist told me that it's no use looking at statistics either because they don't account for individual experiences. She believes in what she calls the "X factor" -- the unknown possibility of doing well or not becoming one of the "terrible" statistics.

Anyhow, I hope I wasn't the cause of too much of your anxiety!! :hug:

Natalie

Natalie8 04-21-2008 12:29 AM

Quote:

Originally Posted by Erin524 (Post 263132)
I used to have a Bouvier des Flandres, named TinyMonsters. Those are big dogs too, not quite as large as a Great Dane tho, but still pretty huge.

I keep waffling back and forth on wanting another dog. I want one, but I think I have an allergy (my allergies all improved after Tiny died, and I had an allergic reaction when I tried to adopt a Yorkie 5 days after Tiny left us)

Then there's the whole fatigue part of MS that's also holding me back on a new dog.

My aunt's Pug just died last month, and she's considering getting a new one, and I'm kind of thinking of getting one from the same litter if we can find some.

I miss my dog, and I miss my aunt's dog. (both our dogs were best friends in the world, they even died on the same date, 2yrs apart)

Wow, Tiny is a very very big dog. Very attractive too. I am trying to cultivate an interest in dogs because I can't have cats anymore. I had to give away my Abyssinian cat after 7 years. I developed horrible cat allergies that came out of no where. I tried everything--allergy shots, acupuncture, chiropractic, you name it. Nothing worked. It just about killed me. Fortunately, an old boyfriend that had lived with me and the cat took him so he went to a familiar person. I still get reports and photos. He is now 15 and is a diabetic. The old BF has to give him insulin shots everyday! So the cat and I do the daily shots.

Erin524 04-21-2008 12:52 AM

Quote:

Originally Posted by Natalie8 (Post 263138)
Wow, Tiny is a very very big dog. Very attractive too. I am trying to cultivate an interest in dogs because I can't have cats anymore. I had to give away my Abyssinian cat after 7 years. I developed horrible cat allergies that came out of no where. I tried everything--allergy shots, acupuncture, chiropractic, you name it. Nothing worked. It just about killed me. Fortunately, an old boyfriend that had lived with me and the cat took him so he went to a familiar person. I still get reports and photos. He is now 15 and is a diabetic. The old BF has to give him insulin shots everyday! So the cat and I do the daily shots.

I started to develop all sorts of allergies around the time that I think my MS started. I've always kind of wondered if MS is related to allergies somehow. Allergies are abnormal immune responses, and MS is the mother of all abnormal immune responses.

RedPenguins 04-21-2008 01:48 AM

Quote:

Originally Posted by Natalie8 (Post 263135)
Hi Keri,

I'm sorry I freaked you out too with those articles!! :eek: I don't know why I went back to look at my MRI reports or why I was researching MS stuff again. Probably because I started panicking about what might happen if I can't tolerate the copaxone. It's making me feel kind of flu-like. Then what is next?? Interferons are out because of a history of depression (2 weeks of Rebif and I started getting massively depressed not to mention sick as a dog). Tysabri scares me. How are you doing on that? Did your first infusion go okay? I followed some of your threads and was glad to hear you finally got on it.

Yes, the whole "at some point we stop counting" REALLY scares you, doesn't it? Yeah, every time I see the word "multiple sclerosis" I get frozen too. They are such two ugly words. Why couldn't it have a better sounding name? Like C.B. for cotton balls? Or PBP for Pretty Brain Pattern?

I am also sorry you are feeling physically crappy too. I was going to say s**tty but they blocked out my previous use of (another word for donkey) so I figured that one wouldn't be okay either.

The first neurologist I saw who had to admit me into the hospital because my internist couldn't (and it was Friday and he was the only guy on call) was terrible. I dumped him right away. BUT...he did give one good piece of advice. He said not to go online and google about other people's experiences because everyone has a different course--no two cases are really alike--and there is no point in trying to scare yourself or compare. My MS therapist told me that it's no use looking at statistics either because they don't account for individual experiences. She believes in what she calls the "X factor" -- the unknown possibility of doing well or not becoming one of the "terrible" statistics.

Anyhow, I hope I wasn't the cause of too much of your anxiety!! :hug:

Natalie

I want PBP - Pretty Brain Pattern. I say that we start a campaign on that immediately....with all our spare energy. LOL :p

No, you didn't create more anxiety in me...I was having it already. I'm researching alternatives in case Ty doesn't work for me (but it will!!) - b/c I think knowing the information helps me when I have a panic-relapse! ;) This way when I begin to think "What if the Ty doesn't work" - then I can answer myself with, "Okay, I will do XXYYYYZZZ then."

My first Tysabri infusion was great - no complaints...was very easy (uh, yeah, I mean the infusion part - not the "getting to the infusion" part...but I think you read about that part!). I had some major fatigue afterwards and just felt like crud for a few days... but no other side effects directly related to the Tysabri (just the MS).

I'm not frightened of the Tysabri...the MS scares me more...so it was more than worth it to me to get on it. I agree that we can't rely on other people's disease experience...b/c we are all different...but it seems that with Ty, if it works for you, it REALLY works for you...and if it doesn't work, then it doesn't! The possible benefits of Ty far outweighed the risk. I think the problems with Ty have been over-sensationalized....but to be honest, I'd rather know of the possibilities....I just didn't let them scare me. Besides, the interferons scare me way more than the Ty. I go for my 2nd infusion at on May 2. I'm all prepared: ativan in one hand, benadryl in the other. Oh, and I guess I need some extra hands to carry my blankey!

BTW, I like small dogs...I just got a yorkie puppy for Xmas (sadly, she now lives with my best friend and her toddler....b/c I couldn't take care of her).

~Keri

sheena 04-21-2008 02:46 AM

Does anyone know the dif between T2 and T1. My report talks about T2 signal intensity and the standard multiple, numerous... have to love the fact I have a 1cm, and 9mm one and smallers. I have heard no one say they had a 1cm one.

I see Beauty thinks T2 are new ones and unhealed. Does that mean I may not have had this as long as I think? I have no mention of a T1.

Natalie8 04-21-2008 05:13 PM

Quote:

Originally Posted by RedPenguins (Post 263161)
I want PBP - Pretty Brain Pattern. I say that we start a campaign on that immediately....with all our spare energy. LOL :p

No, you didn't create more anxiety in me...I was having it already. I'm researching alternatives in case Ty doesn't work for me (but it will!!) - b/c I think knowing the information helps me when I have a panic-relapse! ;) This way when I begin to think "What if the Ty doesn't work" - then I can answer myself with, "Okay, I will do XXYYYYZZZ then."

My first Tysabri infusion was great - no complaints...was very easy (uh, yeah, I mean the infusion part - not the "getting to the infusion" part...but I think you read about that part!). I had some major fatigue afterwards and just felt like crud for a few days... but no other side effects directly related to the Tysabri (just the MS).

I'm not frightened of the Tysabri...the MS scares me more...so it was more than worth it to me to get on it. I agree that we can't rely on other people's disease experience...b/c we are all different...but it seems that with Ty, if it works for you, it REALLY works for you...and if it doesn't work, then it doesn't! The possible benefits of Ty far outweighed the risk. I think the problems with Ty have been over-sensationalized....but to be honest, I'd rather know of the possibilities....I just didn't let them scare me. Besides, the interferons scare me way more than the Ty. I go for my 2nd infusion at on May 2. I'm all prepared: ativan in one hand, benadryl in the other. Oh, and I guess I need some extra hands to carry my blankey!

BTW, I like small dogs...I just got a yorkie puppy for Xmas (sadly, she now lives with my best friend and her toddler....b/c I couldn't take care of her).

~Keri

I like Pretty Brain Pattern too. PBP sounds so much better than MS.
I am confident the Ty will work for you!! :) I feel better too when I have information at hand. But one thing I have learned with this diagnosis (which seems unlike anything else) is that there is a fine line between researching info that makes you feel more control of the situation and researching info that causes extreme panic. I have learned that there is a tipping point where I just need to stop - I'm just not always good at realizing when that tipping point is or maybe I just ignore it to torture myself. Sorry you had to give up your Yorkie puppy!

beautytransforming 04-21-2008 05:19 PM

Quote:

Originally Posted by Natalie8 (Post 263090)
Well according to this study it says about 78% of all people have at least one T1 hyperintense lesion. But 71% of those with SPMS had multiple T1 hyperintense lesions and only 46% of RRMS have multiple T1 hyperintense lesions.

The Mayo clinic said I had a "significant amount of T1 hyperintensities" on the notes for the second visit. What the hell does significant mean? But on the notes for the first visit the doctor wrote the two MRIs done at home show
"T2 hyperintense lesions with decreased T1 hypotensity and actually several black holes. There were more than nine lesions in periventricular, subcortical as well as around the corpus callosum that were in the right orientation location to suggest demyelinating disease. Several of these were enhancing in the initial MRI." Basically I'm confused.

I think this line in another abstract scared me: "Hyperintense MS plaques on T1-weighted MR images are common and associated with brain atrophy, disability, and advancing disease; a hyperintense lesion may be a clinically relevant biomarker."

Anyhow, Erin is probably right. I'm just torturing myself by doing all this reading. It just escalates the anxiety. :(
I don't see the neuro for another month.

So sorry - I did not ask today. I knew there was something I was forgetting. Bad Connie (Can I have a spanking now?). I have an atlas to MS. I am looking through it now.

For right now, don't borrow trouble. Just cause "most" ppl have it, doesn't mean "you" will.

When will you have another appt. Write down ALL questions. Like I said to someone else... demand answers. Be your own advocate, and be as informaed as possible. Bring up the articles you read, and tell them that you want answers.

But, for now, DON'T borrow trouble, we have enough being spoon fed to us... Go out, enjoy the sun, read a good book. Listen to the birds!!!

:hug:
Connie

Natalie8 04-21-2008 05:25 PM

Quote:

Originally Posted by beautytransforming (Post 263590)
So sorry - I did not ask today. I knew there was something I was forgetting. Bad Connie (Can I have a spanking now?). I have an atlas to MS. I am looking through it now.

For right now, don't borrow trouble. Just cause "most" ppl have it, doesn't mean "you" will.

When will you have another appt. Write down ALL questions. Like I said to someone else... demand answers. Be your own advocate, and be as informaed as possible. Bring up the articles you read, and tell them that you want answers.

But, for now, DON'T borrow trouble, we have enough being spoon fed to us... Go out, enjoy the sun, read a good book. Listen to the birds!!!

:hug:
Connie

Thanks Beauty. You are right about "borrowing trouble." I am swearing off of MS research readings for awhile. No worries about asking your doc. the questions. You had plenty on your mind!!

I am too much of an advocate -- I think I drove some of the doctors crazy. The college I teach at is part of a system with a medical school. So I have online access to thousands of medical journal articles through my library. I went on an MS research binge right after the diagnosis and practically made myself an obsessive compulsive. I knew so much that I think the most recent neuro was rather surprised -- but thought it was cool that I could have a more detailed conversation about treatment, symptoms etc. But I am at a point in my life where maybe I don't need any more info....I just need to stop worrying and take it day by day.

beautytransforming 04-21-2008 05:46 PM

Quote:

Originally Posted by Natalie8 (Post 263595)
I am too much of an advocate -- I think I drove some of the doctors crazy. The college I teach at is part of a system with a medical school. So I have online access to thousands of medical journal articles through my library. I went on an MS research binge right after the diagnosis and practically made myself an obsessive compulsive. I knew so much that I think the most recent neuro was rather surprised -- but thought it was cool that I could have a more detailed conversation about treatment, symptoms etc. But I am at a point in my life where maybe I don't need any more info....I just need to stop worrying and take it day by day.

I am like that right now. I have read 4 books, and have about 5 more to read. I have a notebook full of questions for the Specialist, and have faxed him all my info so we can spend QUALITY time instead of him reviewing the info while I am there...LOL

But, then we reach a point where we can't answer our own questions, and research tuns scarey. Sounds like that is where you are!! Hope you get all the answers you need, and it isn't as bad as you think.

lady_express_44 04-21-2008 07:29 PM

Quote:

Originally Posted by sheena (Post 263169)
Does anyone know the dif between T2 and T1. My report talks about T2 signal intensity and the standard multiple, numerous... have to love the fact I have a 1cm, and 9mm one and smallers. I have heard no one say they had a 1cm one.

I see Beauty thinks T2 are new ones and unhealed. Does that mean I may not have had this as long as I think? I have no mention of a T1.


Quite honestly, they do not know for sure the significance of T2 lesions to the disease process yet (believe it or not), but what they do know is that people with this certain type of lesion in their brain or spinal cord will likely be dx with MS at some point. That is the main significance of a MRI; to DIAGNOSE the disease.

The more you research and think you understand about this disease, the more you realize "they" don't know a lot either yet. They are not even absolutely sure that repressing the inflammation that goes on in the lesions (causing them to appear less hyperintense in a MRI) is necessarily a good thing . . . but at this point they are approaching them on the premise that the inflammation is bad.

That is the reason that they treat us with steroids and the CRABs, to hopefully reduce the "flare-ups" of T2 lesions . . . in an effort to try to affect the disease process in the longer run. However, other researchers are of the opinion that we should let our bodies "run the course" of inflammation rather then try to suppress it with meds . . .

The way I understand it, the T2 lesions are the more transient type, that inflame and then most often disappear at will. The drugs we use tend to manage the flare-ups of these lesions, but the fact that they are flared does not mean anything absolute either. That's why you will hear people say that they are very disabled with few lesions, and others have no obvious problems with 100+.

Besides, a person could take a MRI every week and get a different outcome of the number of visible lesions. :rolleyes:

T1 lesions are the destructive ones, that imply more "axonal loss and matrix destruction." Having them correlates more closely with clinical disability then the number of T2 lesions (which tend to be more transient). T1 lesions are the more permanent (black holes), and are found more commonly in those with SPMS (and possibly PPMS). These lesions generally indicate a longer duration of the disease process, and people with RRMS will generally have a lower ratio of T1/T2 lesions then those with SPMS.

Cherie

Natalie8 04-21-2008 08:15 PM

Quote:

Originally Posted by lady_express_44 (Post 263705)
T1 lesions are the destructive ones, that imply more "axonal loss and matrix destruction." Having them correlates more closely with clinical disability then the number of T2 lesions (which tend to be more transient). T1 lesions are the more permanent (black holes), and are found more commonly in those with SPMS (and possibly PPMS). These lesions generally indicate a longer duration of the disease process, and people with RRMS will generally have a lower ratio of T1/T2 lesions then those with SPMS.

Cherie

Thanks for the info Cherie. I'm not sure if the above information makes me feel any better as I was told I have a significant amount of T1 lesions. It really kind of scares me. I don't have any disability though. Why? I just one mild case of O.N. (clinically isolated syndrome) and occasionally dizziness -- but who knows, that could have been from the psuedo-panic attacks I was having in the months after I was diagnosed because I was so freaked out. It has been almost a year since the O.N. began and nothing new has cropped up.

Beauty, great idea on faxing the questions ahead of time!

I think what makes this disease so infuriating is that it is a slippery little critter. There are never really any definitive answers. Knowledge and information always make me feel better but most of the time I can't find the answers to my questions in all of the MS research I read. So that leaves me feeling not only frustrated but scared to death. I am practicing taking Vic's advice about recognizing that MS just IS. Just trying to learn how to be zen. :icon_cool: I'm about to sign up for a yoga class.

lady_express_44 04-21-2008 08:26 PM

Quote:

Originally Posted by Natalie8 (Post 263751)
Thanks for the info Cherie. I'm not sure if the above information makes me feel any better as I was told I have a significant amount of T1 lesions. It really kind of scares me. I don't have any disability though. Why? \

I think what makes this disease so infuriating is that it is a slippery little critter. There are never really any definitive answers. Knowledge and information always make me feel better but most of the time I can't find the answers to my questions in all of the MS research I read. So that leaves me feeling not only frustrated but scared to death.


Natalie, do you have access to your MRI report, as deciphered by the technician? I would get a copy, if you don't already have one.

I mixed up a lot of things that were said to me in those early days, so with any luck, you may find they said T2 lesions instead. :hug:

On the other hand, if it is T1 lesions . . . like I said, nothing really seems to make sense with this disease. I had only 3 small lesions in my brain, even after 12 yrs with this disease, yet they told me I had a significant chance of being bedridden from the get-go with the first and second attack because the attack was from severe spinal ones (lesions); transverse myelitis. I am still walking, 17 yrs later. ;)

There are no absolutes. Even if there are trends, it doesn't mean that is what is going to happen to any one of us.

Cherie

Natalie8 04-21-2008 08:34 PM

Quote:

Originally Posted by lady_express_44 (Post 263764)
Natalie, do you have access to your MRI report, as deciphered by the technician? I would get a copy, if you don't already have one.

I mixed up a lot of things that were said to me in those early days, so with any luck, you may find they said T2 lesions instead. :hug:

On the other hand, if it is T1 lesions . . . like I said, nothing really seems to make sense with this disease. I had only 3 small lesions in my brain, even after 12 yrs with this disease, yet they told me I had a significant chance of being bedridden from the get-go with the first and second attack because the attack was from severe spinal ones (lesions); transverse myelitis. I am still walking, 17 yrs later. ;)

There are no absolutes. Even if there are trends, it doesn't mean that is what is going to happen to any one of us.

Cherie

Thanks Cherie. Yes I have access to the 3 MRI's I had in Sept. 2007, Oct. 2007, and Dec. 2007 and every other report written by every doc. I saw The first two MRI's were in my home city. The reports didn't talk much about T1 lesions. But the Mayo Clinic doctor who interpreted them said I had multiple T1 hyperintensities (and black holes) which is why I should go on high dose interferon immediately. I only lasted 2 weeks on Rebif--severe depression and bedridden the entire time from sickness. And I only made it to the lowest titrated dose. I'm on copaxone now, for 3 weeks, and it is making me feel REALLY crappy. My body does not like meds at all. I don't know how long I can last on it. Anyhow, I have an appointment with my city's MS clinic and the famous doc and his cohorts on June 5. So I will be anxious to see what they say. The neuro I have now pointed out some black holes and white lesions but didn't say much--she certainly wasn't alarmist like that hideous mayo clinic doctor. It's just the more I read the more freaked out I get. Which is why I need to cut back on the reading!

I'm glad you are still walking! :trampoline:

lady_express_44 04-21-2008 08:43 PM

What's the saying, "we only use 1/10th of our brain" . . .??

Location, location, location . . . that's what we all used to say on the forums, when it comes to lesions. Yours must be in good places, or perhaps very small.

Ask lots of questions next time you see him/her . . . for what it's worth. :p

Cherie

lady_express_44 04-22-2008 12:08 PM

Quote:

Originally Posted by lady_express_44 (Post 263764)
On the other hand, if it is T1 lesions . . . like I said, nothing really seems to make sense with this disease. I had only 3 small lesions in my brain, even after 12 yrs with this disease, yet they told me I had a significant chance of being bedridden from the get-go with the first and second attack because the attack was from severe spinal ones (lesions); transverse myelitis. I am still walking, 17 yrs later. ;)


Someone sent me a PM expressing concern over my previous comment, "they told me I had a significant chance of being bedridden from the get-go". I thought I should try to explain what I meant because it was specific to my situation with this disease . . .

We can have lesions in our brains or our spine, and although many of us apparently have spinal lesions (something like 75%), for some unknown reason it seems that most people don't seem to EVER have ANY significant problems from the spinal ones. (I don't know the % that does, but after being on the forums for many years, it seems a relatively small number . . .).

The reason the doctors mentioned "bedridden from the get-go, etc.", for me, was because I tend to have considerable inflammation with my spinal lesions, and the attacks are severe when they occur. The odds are not that great of full recovery from a severe spinal lesion attack . . . but I have been reasonably lucky that the lesions have healed fully, or at least somewhat, each time after the attack.

Spinal damage, from whatever cause (a fall, lesions, etc.), is not good. It's kinda' like when someone breaks their neck (think Christopher Reeves), as far as the "threat" to our eventual outcome. In our case (with MS lesions), the amount of "permanent damage" from flare-ups is dependant on how high up the inflamed lesion is (C-spine), how severe the inflammation is when it occurs (how much of the spinal cord is damaged), and then how much recovery there is after healing.

So . . . it's my understanding that inflamed spinal lesions are the biggest IMMEDIATE threat some of us might have from with this disease, no matter how progressive the disease appears (or doesn’t appear) to be in our brain.

As far as T2 brain lesions, the inflammation tends to be more transient in that they inflame and disappear sometimes very regularly . . . but fortunately our brains can usually re-route/compensate for this. Transient inflammation of brain lesions often leaves no damage what-so-ever either, and it may take several years before we even notice disability from them (except perhaps temporary effects during an attack). That's why we can have "dozens" of lesions (and not even necessarily be in an attack) . . . yet not feel a thing or have any damage.

The theory is that the drugs we use might reduce the amount of inflammation/potential attacks, hopefully resulting in less T2 lesion activity. Theoretically, this might ultimately reduce the number/size of T1 lesions (the more permanent kind) too, hopefully leading to less “permanent” disability. The process for this cycle (from T2 to T1 lesions & disability) is usually fairly long-term, unless any one lesion is in a critical part of the brain.

The problem with the current approach to managing this disease, i.e. reduced inflammation hopefully leading to reduced disability, is that things don’t always work out that way. Even if our drug of choice might lead to a 100% reduction in relapses/acute disease activity (as measured by a MRI) . . . this doesn’t necessarily amount to a reduction in disease progression or disability. There is some correlation, but it is not entirely convincing, IMHO.

The current research seems to point to inflammation as being the initial phase of the disease, but that it is neurodegeneration that ultimately leads to disability. The inflammation process might play a part in neurodegeneration, and they suspect it does, but it is actually the neurodegeneration process that leads to disability. That is perhaps the reason that PwPPMS and SPMS have very little inflammation activity, yet they quickly or continuously decline.

This is how I understand things anyway. :D

Anyway, I really just wanted to clarify the role of spinal lesions, and why they had told me I might be bedridden from the get-go, even though I only have 3 brain lesions. Spinal lesions are my biggest obstacle/immediate threat with this disease.

Cherie

Erin524 04-22-2008 01:45 PM

I shouldnt have read the last few messages in this thread. I have spinal lesions (C4 and T12), and only two little "white dots" in my left frontal lobe that "are not indicative of MS".

Now I'm going to be worried about those spinal lesions. I have to resist the urge to dig out my MRI reports and see if they're T1's or T2's.

lady_express_44 04-22-2008 03:37 PM

Quote:

Originally Posted by Erin524 (Post 264315)
I shouldnt have read the last few messages in this thread. I have spinal lesions (C4 and T12), and only two little "white dots" in my left frontal lobe that "are not indicative of MS".

Now I'm going to be worried about those spinal lesions. I have to resist the urge to dig out my MRI reports and see if they're T1's or T2's.



But Erin, like I said earlier:


Quote:

Originally Posted by lady_express_44 (Post 264237)

although many of us apparently have spinal lesions (something like 75%), for some unknown reason it seems that most people don't seem to EVER have ANY significant problems from the spinal ones.

(I don't know the % that does, but after being on the forums for many years, it seems a relatively small number . . .).

The reason the doctors mentioned "bedridden from the get-go, etc.", for me, was because I tend to have considerable inflammation with my spinal lesions, and the attacks are severe when they occur. The odds are not that great of full recovery from a severe spinal lesion attack . . .

In our case (with MS lesions), the amount of "permanent damage" from flare-ups is dependant on how high up the inflamed lesion is (C-spine), how severe the inflammation is when it occurs (how much of the spinal cord is damaged), and then how much recovery there is after healing.


After all these years on the forums, I can only list off a handful of people that have had spinal lesion attacks like the ones I've had; THEY ARE THAT UNCOMMON! And, even though I've had them . . . here I am 17yrs later and still walking.

Some people are exceptionally curious about sourcing this information, and they ask the hard questions (about T1 vs. T2 vs. spinal vs. brainstem lesions, etc.) Other people find it frightening, but still want to know. Then there are those that find it stressful to know. I struggle with what to say to satisfy the questions, and of course it is only my interpretation of the way things are too (to be taken with a grain of salt). . .

The thing to keep in mind though is that there are no absolutes with this disease. We all know this isn't a great disease to have (without being subject to the nitty gritty details), but it is one disease where they are very motivated to find the answers too. As my doctor said a few months ago, there couldn't be a better time to have it then right now, with all the new technology and treatments on the horizon. There was nothing to help us back in 1991 (when I was dx), and we've come a long way since then . . .

Don't worry about something you can do nothing about, especially if it's never caused you any significant problem in the past. There are a few people who have bigger challenges, or perhaps somewhat worse odds then the majority, but these complications are highly unlikely. It's the same with anything in life; bad things happen to a few people. . . but we can't let that fear rule OUR lives. :hug:

Cherie

Natalie8 04-22-2008 04:00 PM

Quote:

Originally Posted by lady_express_44 (Post 264237)

Transient inflammation of brain lesions often leaves no damage what-so-ever either, and it may take several years before we even notice disability from them (except perhaps temporary effects during an attack). That's why we can have "dozens" of lesions (and not even necessarily be in an attack) . . . yet not feel a thing or have any damage.
Cherie

I'm not sure this is totally accurate based on what I've heard from the various neurologists I have seen and all the medical journal articles I have read. I teach in a university system that has a medical school so I have access to online neuro journals--I've probably read too much of it and given myself a scare. Anyhow, there are still plenty of unknowns with MS and my understanding is that researchers are now making the argument that you can have damage to the brain that is not visible on the MRI. (read some of Dr. Elliot Frohman's research from UT Southwestern Medical School) I'm not sure "transient" really means transient in terms of damage. Just because you can see something or not see something doesn't mean you have a relatively definitive answer as to level of damage or course of disease or even symptoms. Remember there are occasionally people who have no visible lesions on the MRI but seem to have classic MS symptoms. OR you could have lots of lesions and no clinical symptoms (and perhaps no immediate inflammation visible on the MRI) but that doesn't mean your brain is free of any damage. In other words, I don't think that lack of inflammation = lack of damage.

lady_express_44 04-22-2008 04:12 PM

Quote:

Originally Posted by Natalie8 (Post 264378)
I'm not sure this is totally accurate based on what I've heard from the various neurologists I have seen and all the medical journal articles I have read. I teach in a university system that has a medical school so I have access to online neuro journals--I've probably read too much of it and given myself a scare. Anyhow, there are still plenty of unknowns with MS and my understanding is that researchers are now making the argument that you can have damage to the brain that is not visible on the MRI. (read some of Dr. Elliot Frohman's research from UT Southwestern Medical School) I'm not sure "transient" really means transient in terms of damage. Just because you can see something or not see something doesn't mean you have a relatively definitive answer as to level of damage or course of disease or even symptoms. Remember there are occasionally people who have no visible lesions on the MRI but seem to have classic MS symptoms. OR you could have lots of lesions and no clinical symptoms (and perhaps no immediate inflammation visible on the MRI) but that doesn't mean your brain is free of any damage. In other words, I don't think that lack of inflammation = lack of damage.


I think we are saying the same thing, Natalie . . . but in that particular paragraph I was only referring to "active" lesions that are apparent on a MRI.

What you are saying is what I was trying to get at with my comments about neurodegeneration causing the damage, vs. inflamation. I believe that they recognize our lesions as the inflamation process that is going on, BUT that this is not the whole story. Some people have considerable disability with few lesions, and vice-versa . . . and some researchers currently suspect that is because there is another process going on too (i.e. neurodegeneration).

http://www.ncbi.nlm.nih.gov/pubmed/17397873

http://www.ingentaconnect.com/conten...00003/art00002

Or did I misunderstand your point? :confused:

Cherie

Natalie8 04-22-2008 04:32 PM

Quote:

Originally Posted by lady_express_44 (Post 264388)
I think we are saying the same thing, Natalie . . . but in that particular paragraph I was only referring to "active" lesions that are apparent on a MRI.

What you are saying is what I was trying to get at with my comments about neurodegeneration causing the damage, vs. inflamation. I believe that they recognize our lesions as the inflamation process that is going on, BUT that this is not the whole story. Some people have considerable disability with few lesions, and vice-versa . . . and some researchers currently suspect that is because there is another process going on too (i.e. neurodegeneration).

http://www.ncbi.nlm.nih.gov/pubmed/17397873

http://www.ingentaconnect.com/conten...00003/art00002

Or did I misunderstand your point? :confused:

Cherie

Cherie,

Maybe I misunderstood you! Yes, I was suggesting that some other process is going on that isn't really identifiable on the MRI and they aren't even sure what it is. The research I had read said that it is imperative to get on one of the CRABs because there is always damage going on in the brain that just may not be visible on the MRI. That was a scary proposition. No matter what, the uncertainty of this disease is something that I haven't dealt with yet...maybe it's something you never really adjust to?? I find the whole thing still very frightening-- but I've only been diagnosed for 8 months. It seems that all of the unknowns take a tremendous toll on you psychologically.

lady_express_44 04-22-2008 05:00 PM

Well, they don’t know for sure what our current DMD’s are doing for us, BUT they have proven scientifically that they have the potential to reduce inflammation for some people. What else they might be doing, and/or why, no one really knows.

However, in spite of their effect on a reduction to relapses and/or inflammation, the DMD’s don’t influence ‘disability progression’ to the same degree. For many, they continue to progress with disability at exactly the same pace, even though they appear to be more stable (i.e. less relapses and visible lesions).

So, there is clearly something else to the disease process that the DMD’s aren’t necessarily influencing. The current theory is neurodegeneration, and this is what this Pubmed article is referring to, particularly in the last sentence . . .

"A number of recent magnetic resonance imaging studies have challenged the classical view of multiple sclerosis (MS) as a "two-stage" disease where an early inflammatory demyelinating phase with focal macroscopic lesions formed in the white matter (WM) of the central nervous system is followed by a late neurodegenerative phase, which is believed to be a mere consequence of repeated inflammatory insults and irreversible demyelination. These studies have consistently shown the presence of diffuse normal-appearing WM damage, marked gray matter involvement and significant cortical functional reorganization, as well as the occurrence of the neurodegenerative component of MS from the earliest clinical stages of the disease with only a partial relation to MRI markers of inflammatory demyelination. The present review argues that MS can no longer be viewed as a "two-stage" disease, which suggests that the two pathological components are dissociated in time, but rather as a "simultaneous two-component" disease, where the relative contributions of the various pathological processes of the disease to the development of "fixed" disability, their relationship and their evolution over time need to be clarified. This new view of MS should inform the development of future research protocols to define its actual physiopathology and prompt the institution of early treatment which should ideally target not only inflammatory demyelination, but also the neurodegenerative aspects of the disease, as well as promote neuroprotection and enhance reparative mechanisms and adaptive functional reorganization of the cortex."

Quote:

Originally Posted by lady_express_44 (Post 264388)

Cherie

Erin524 04-22-2008 05:29 PM

It's not so much of a worry as it is a weird, morbid curiousity of what the MS Trolls in my body are going to do to me.

I'm really hoping that I'll be one of those MSers who can make it to old age without any major disabilities or serious problems related to the MS. I dont think that will be the case for me, but I can always hope.

I already am probably going to be the primary caregiver for my mom (she had a contra-coup concussion when she was 17 and was in a coma for 5 weeks. We're now getting a good look at what a TBI can do to a person years down the road)

I'm hoping that my mom and I wont be sharing a primary caregiver...having scooter/wheelchair races in the street in front of the house.


I'm still hoping that the medical-science geeks will invent a machine in my lifetime that you can get into or wave over someone (a'la Star Trek and Stargate) that will cure everything wrong with you. That would be so cool. Get a degenerative neurological disease, no problem, get into the Medical Curer-3000 and you're cured. Break a leg, get it fixed in 10 minutes. Cough up a lung, sit for 30 minutes and regrow the lung.

Of course, that's wishful thinking, but it would be nice if they figure out a cure within the next few years...I could live with a little numbness and occasional vision weirdness if they could find a cure to keep all of us from getting any worse.


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