Question on thoracic MRI

[saraht79]

Hi to all - I originally sent this message to Quixotic1 and she suggested that I post to all  - so here is my message in its entirety. Input from anyone would be greatly appreciated! Thanks!

Hi!
I just joined this site today. It didn't take me long to gather that you were the resident expert on all things MS, especially MRIs. I got a kick out of some of your posts, and I also learned a few things - and I thought I knew almost all there was to know on MS! I hope you don't mind that I am sending you this message directly - I have been searching everywhere on the internet and can't seem to find answers. I'll give you a little background on me, since I have already read the background on you: I am 29 years old, diagnosed with RR MS in 2003. I started having issues in college - mainly extreme fatigue. The first time I went to student health they did blood work which was sent to some specialty facility in Utah to test for epstein-barr and told me that I was positive for Epstein-Barr virus. I got better, but the fatigue never really went away.  When it got really bad my senior year, I went to student health twice. They tested me for mono and when that came back negative, they told me I was depressed. I told them the only thing I was depressed about was my extreme fatigue (lol). I got frustrated and gave up. I chalked it up to "getting older" and fatigue just became part of my life. Fast forward to 2002: I started having pain in my right eye. I thought it was from staring at a computer too long (I worked as a copywriter back then). Then I got ill with a high fever- at the end of my illness my stomach went numb. My doctor set up a neuro appt. By the time I got to my neuro appt , I was having l'hermitte's sign and constant tingling in my hands and feet in addition to the numbness. All the correct tests were performed - MRIs showed I had active lesions in my cervical spine and two "questionable" lesions in my brain, my spinal tap was normal, visual evoked potentials showed optic neuritis. I had a repeat MRI three months later which showed more lesions in my cervical spine. My initial neuro down in Florida (one of the "weenies" as you guys seem to call them) said to me "everything looks like MS, but I'm not going to diagnose you with MS because you are young and I will screw you over with your insurance companies for life. Go home and have a drink to celebrate" I walked out of there thinking "Celebrate what? That it looks like MS but he is choosing not to call it MS?" That is when I flew to Boston to see a MS specialist and immediately got a diagnosis. She said there was absolutely no question.  I have done well since 2003 until recently. I have a yearly MRI - this year's showed just one additional active lesion in my cervical but my current symptoms made my local neuro (I have two - my specialist in boston and general neuro in florida) decide that I should have a thoracic mri for the first time. My local neuro never calls me back with results (despite my repeated phone calls - don't even get me started on what crappy medicine is practiced in florida and I should know because I now work as a nurse in florida) so I went ahead and requested the mri results from the facility that performed them. I thought (since I am a nurse nowadays) that I would understand what the results meant, but I don't. I am hoping that you can clear it up for me. Obviously, I will discuss these results with my MS specialist in june when I fly up to see her, but I am hoping you can shed some light in the meantime. I greatly appreciate it, and I hope I haven't bored you with the long history - I just thought I should give some background before launching into the mri results. The results for the MRI of the thoracic spine, with and without contrast, are as follows:

FINDINGS: The thoracic vertebral bodies are normal in height and alignment. Small disc protrusions are noted at T4/5 through T6/7 without cord compression. The thoracic cord demonstrates multiple areas of patchy abnormal increased T2 signal. The most prominent region on the proton density images is at T10, where signal abnormality appears to occupy much of the central spinal cord and extends throughout the length of the vertebral body. The spinal cord appears minimally expanded at this level as well. Proton density images also demonstrate a focal area of signal abnormality in the dorsal spinal cord at the level of the T11/12 disc space. The other signal abnormality is patchy and multi-focal involving much of the upper and mid thoracic spinal cord. the distal cord and conus appears spared.
IMPRESSION: Findings compatible with demylelinating disease

Ok, this made no sense to me so I looked at the pictures. I could see white areas in the thoracic spinal cord. They don't describe these as lesions in the report though, as they did on my brain and cervical. They describe it as areas of "increased signal" What does this mean? Are they lesions? Are they old lesions? Soon-to-be new lesions? Areas of inflammation? I am confused. If you can shed some light I would be very grateful.

On another kind of unrelated note, what are your thoughts on tysabri? I take rebif, but had one dose of tysabri in conjunction with rebif when it first came out (before a couple people died from it). My "tingles" disappeared a few weeks after that one infusion. Right after that it was taken off the market for a period of time. I am wondering if you have tried it or talked to people who have. Just curious. I have a feeling they will be changing my medication very soon due to my recent MRI results, but I get the feeling that my specialist views tysabri as one of the "big guns", as in " we will wait to use that as a last resort." Wondering if your specialist thinks the same.  Thanks again for your time and for reading this...I hope you are able to get back to me. I look forward to reading more of your posts in the future, and perhaps do a few posts of my own. :)
Best,
Sarah



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Quixotic1
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Mood: Quixotic1 is needing to be more careful around salad bars. Anyone missing their tongs??
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  26 minutes ago
Hi, Sarah, I'm so glad you found us and thak you for writing to me.  I need to explain, though that I do not do answers or consults here in the Private Messaging section.  The reason is that I get multiple requests every day and that my energy is limited.  All of the things you ask are very appropriate for discussion on our forum.  I would love to have you copy and paste this to the forum and I will discuss each point.  That way I reach more people with my effort and, if I make a mistake, someone can catch me or disagree with me.  There is more accountability.

And, I wish I was the expert you think you found.  There are many, many holes in my knowledge.  MS was only brought into my life about 15 months ago.  I keep reading, but there is much more.

I do hope you join us.  I love your question about the radiologist's word use in describing your T-spine!

Welcome again.

Quix

[jillybean1975]

Thank you. I in fact just posted a question, as I was actually searching for some answers on my one when a google search brought me to this site. I am genuinely loving it!  Thank you for making a forum like this, it is needed and appreciated.  In the 2000 I facilitated a support group for newly diagnosed MS patients at the request of my nuerologist,  forums such as this were not available.

[kwarendorf]

Hi JB - Welcome to the group.

You give sage advice. THis thread is a bit old though. It was last updated over 6 years ago. WHy not Post A Question and introduce yourself. We're a very friendly bunch.

Kyle

[jillybean1975]

I too had what was called "silent progression" of MS while on Avonex, Rebif, Copaxone, Beta Seron, each one obviously leading up to next, finally on Tysabri, been on it now for 4-5 years. It is only just now starting to show chronic progression, still RRMS though.  ANY patient showing silent progression on MRIs, should not waist time, they should go on to another MS med as soon as possible.  I have been diagnosed for over 21 years now, I speak not of simple knowledge but from the wisdom that comes through experience.  Best of luck.

[Quixotic1]

Hi, again, over here!  I'm glad you joined the forum.  It's a lot more fun over here and you'll get a lot more attention;

As for interpreting your MRI.

I have a little different take on the wording used by the radiologist.  But, of course none of us can be sure without see (and understanding) the images.  I do not look at MRI images becasue I was never trained to read them.  

My understanding of the words "patchy hyperintensities" would be that there are lighter/brighter  areas which are not well-defined.  The edges may be blurry or indistinct.  When I had my spine MRI on the 1.5T machine, my neuro pointed out a couple areas which he called "patchy."  They were, in my case, small and had a ratty, uneven texture.  When I had the MRI on the 3T machine those indistinct areas were bright, clearly defined plaques.

So, I think they may be poorly visualized lesions.  May need images done on a higher power MRI, unless they did use a 3T.  In that case they are developing lesions, probably.

So, I am thinking that the areas are "different" and brighter, but without clear edges.  

Increased Signal - this is really the same as lesions, but not necesarily the same as having the appearance of a plaque.

Foci - Spot  (usually well demarcated - clear edges)

Focal areas - localized spots

Now the wording that concerns me is that at one point the cord appears "minimally expanded".  I take that to mean that there has been some swelling or edema.  This would indicate a newer rather than an older lesion.  Newer ones tend to have inflammatory edema and older ones would cause the spine to be the same size or would show contraction/shrinkage/atrophy (all of those indicating the same thing - death and loss of the nerve fibers)

This would explain new symptoms.

Now whether or not these all are new or old, there is no way of telling from the MRI.  However, most spinal lesions are symptomatic and if there are new symptoms that refer to that area, you can assume that at least some of the lesions are newer.  I'm a believer in getting baseline images.  My neuro always includes the T-spine.

My neuro is a major researcher in Avonex and Tysabri.  His view is if one of the CRABS doesn't work, it IS time for the big guns.  At least that is the direction he has told me about my course.  I don't think he feels that moving from Avonex to Rebif would gain much over the long course.  We haven't taken that step, but if my Avonex has failed (I'm just finishing my first year and have had 2 relapses in the last 5 months), then he wants me to choose between Tysabri and Novantrone.

BTW - the conventional wisdome is that Tysabri will be much safer used alone.  In two of the patients who died, Tysabri was being used along with an Interferon.  The other patient had Crohn's Disease and not MS.  

Novantrone is a cytotoxic drug - a chemo drug that does dose-related damage to organs.  I would not choose that for me.  The standard warning is that each of them carries about a 1 in 1000 chance of a fatal side effect.

I hope this has helped some.  And I hope it is clear.  My brain isn't today.

Quix

[sllowe]

Hi Sarah,

I am too so very glad you joined us.  I'm sorry I don't have specific information for you to help disect your MRI findings, but our group is so good.  Those who have knowledge in some areas will help if they can.  You just might need to piece these things one by one.

You will get so much support here, and I hope you stay w/us so we can try to help.

Also so glad you are going in June to the Doc.  I look forward to hearing what they say about this.  In the meantime, we'll just keep picking these words apart for you.

T-Lynn may have some thoughts on this too, her screen name is young at heart. .

Again, welcome, we're glad to have you,
-SL

[essdipity]

To the best of my knowledge, 'areas of patchy increased signal' is one of the many sort of wimpy ways of describing lesions. The radiologist doesn't want to go out on a limb and make his description more definitive. And it's possible that that's just standard lesion language at the facility where he works. Same thing for the other 'foci' (spots) he notes. In any case, his impression is what counts, and he is seeing a lot that looks like MS. Your T10 and T11/12 areas are most involved.

You also tell us that you have had previous cervical involvement, and that that is increasing slightly now. And that you have brain lesions as well, that have caused you signiicant difficulty. So without knowing your details, I am thinking that at this point you have multiple brain, cervical and thoracic lesions. Your MS is progressing rapidly and it doesn't seem that the Rebif is doing much of anything. I don't know your general quality of life, but if you are able to work as a nurse that's good. We want to keep you at least at that level.

In my view, then, more aggressive treatment is warranted. You are still in your 20s, and want the best possible future. If I were you I'd read all I could about Tysabri, and what's happened since it's been back on the market. I believe there a few members here on that, after trying the lesser stuff, so I hope they will comment. But collectively there's a large body of info here, much of it anecdotal, true, but it should be of help.

Please let us know about your research and how you're doing.

ess

[biowham]

Hi, Sarah--

The increased signal means that on T2 weighted images, you've got those white areas--that's a "hyperintense" area--more intensely bright than the areas around it. Sounds like it's fairly longstanding because you've got a bit of cord expansion, too. These are lesions, and it's not uncommon for them to be "diffuse" rather than "focal" in the cord, especially after some time, although you've got a few focal ones, as well. They're like the ones in the brain, chemically speaking and in their response to the MRI magnet. Unless they're enhancing, they're not "active inflammation," they're just there, possibly causing problems. Sounds like you have a ton of cord involvement in your MS.

Bio