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.
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
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.
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
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
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
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