Another MRI....

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Another MRI....

Postby viper498 » Thu Jul 06, 2006 6:33 am

I am going in for another MRI on July 10th (this coming Monday). The last time I had an MRI was June 24th, 2005. This MRI had a lot of small lesions scattered all over my brain. My presenting symptom was Nystagmus of the right eye. Since then, I've had no symptoms that I've noticed. I've been taking Rebif since last August, but as of late, i've not been adhearing to the 3 days a week regimen, sometimes its 1 injection for the week, or sometimes 2, although most weeks I still take all 3.

Even though its speculation, what do any of you think this next MRI will show???? Will it look the same? Just something to ponder. I welcome any input.

Brock
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Postby viper498 » Thu Jul 06, 2006 7:13 am

How many out there have only had ONE CIS or symptom which was at least a year ago and no other symptoms?

Then, of those of you who fit that description... How many of you have had a follow-up MRI? and how did it look?
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Postby amelia » Thu Jul 06, 2006 7:29 am

I wouldn't put a lot of concern in your MRI. We've been discussing here how the EDSS, rate of disablity, relates to the MRI lesions. Gary, my husband, is about a 6.5, on a cane, mostly legally blind, other symptoms and issues with only 5 old lesions in the brain. We are looking to have a MRI of the spine this year. That is where most of his attacks have been. But, I don't know how much will be there. He had been paralyzed MANY times from the neck down in the 1980's and his MRI at that time showed NOTHING! I still feel that the disability that we are all concerned about is coming from somewhere else. Hey, if you're doing good, then great. Live it up and hope your case is a mild or non existant one.
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Postby viper498 » Thu Jul 06, 2006 7:49 am

Amelia, thanks for the reply. I totally agree with you. I almost think that the MRI is a waste of time for MS related symptoms.

I am just trying to see how often people get diagnosed with similar lesion patterns, and/or symptoms and circumstances, and how they are doing a year or more down the road and what their MRI looks like a year or more down the road (if they've had one). I am looking for some sort of trend or pattern or something. I get so skeptical as to whether I have "MS" or not. I really don't feel like I have any problems at all. I cherish every day because of that, but it does put a cloud over my future and I am just seeking answers to very hard and even unanswerable questions.
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Postby viper498 » Thu Jul 06, 2006 6:49 pm

No one else?? any input??? No one?
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Postby amelia » Fri Jul 07, 2006 7:10 am

I never gave you all about Gary and the MRI's. He had one 10+ years ago on the brain. Nothing anywhere. In 10 years he aquired 5 lesions in the brain. BUT his disability was very little 10 years ago. Now it is about 6.5, as I said before.
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Postby LisaBee » Fri Jul 07, 2006 8:45 am

viper,

The initial brain MRI I had that lead to the diagnosis in summer 2004 showed areas of gliosis and a couple of lesions that were still faintly enhancing. I had evidence of several old lesions, like you, scattered all over. At the time I had the MRI my symptoms that brought me to a doc had mostly resolved. I haven't had another brain MRI since. I had a cervical MRI this year for minor symptoms of possible ulnar neuropathy- an X-ray showed possible impingement from cervical disks so the cervical MRI was done. The cervical MRI was basically normal, which was a relief. My neuro is after me getting another brain MRI to follow up. The problem is, my insurance raised the copay for MRIs - they used to be all covered by insurance and now they cost me 100 bucks out of pocket. Since I'm not on any CRAB treatment nor plan to be, I don't know what good the MRI would do, other than satisfying my inquiring mind (and that of my neuro) and costing me 100 bucks. If my MRI looked good that would make me happy, if it didn't look good it would make me unhappy, and since I can't do anything about it I'd rather not know and assume I'm doing okay. The 100 bucks is going towards my vacation, which I hope will be much more fun.

I don't know how many follow up MRIs people typically get once they have an MS diagnosis. I suspect, unless a doctor is specifically monitoring for response to a CRAB, people don't get many more done. They are expensive. Being in a clinical trial might be the only other category for people getting sequential MRIs. I could be wrong about all that, I'm just guessing. But it might explain why you haven't got much of a response and why you might have trouble getting info - probably not many people have the info you are looking for. Good luck with your one coming up - may it be better, or at the least, "no worse."

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Postby EyeDoc » Fri Jul 07, 2006 11:34 am

Personally, I have had only one MRI that showed several lesions in the brain and inflammation of one of my optic nerves. My neurologist has asked me twice since then to get a new MRI done (original one was in 2003), but I have elected not to. It would cost me $1000 out of pocket after insurance, and what good will it do? If I have more lesions there is nothing else they can do. I take Avonex weekly regardless of the number of lesions I have. Besides, it would be very depressing to me to see that I have more lesions :( I'll just be ignorant and happy!
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Postby viper498 » Fri Jul 07, 2006 12:29 pm

Those are good points. My MRI is going to cost me $250.00 + 10%. I guess I just want to see what the inflamation looks like a year down the road.

I want to see if there are different kinds of brain inflamation and/or lesion patterns. For example, what if I get my MRI and it shows nothing? If it did show nothing, what does that mean? If I get it and it looks the same or worse does that mean that I will be disabled soon?

I have no clinical symptoms, yet. It doesn't make sense that I would have no clinical symptoms but have inflamation all over my brain. At least a year ago when I was in the hospital, there was a correlation between a clinical problem, and the MRI representation. It is just so nerve racking to think that I feel good now but I may be much worse off soon.

How long does the average person with MS go from the first manifestation of MS to the next exacerbation?
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Postby amelia » Fri Jul 07, 2006 12:36 pm

How long does the average person with MS go from the first manifestation of MS to the next exacerbation?

That is the $1,000.00 question. Some people, the lucky ones I think, have one or 2 and then no more. Gary had as the DR put it "dooseys". Bedridden for weeks. Some in our group suffer a little numbness, but really don't stop what they are doing. And the time frame can be weeks, months, years, or anybodies guess.
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Postby LisaBee » Fri Jul 07, 2006 1:37 pm

Brock,
No one can really say. Not even a neuro can say. My neuro refused to give me any kind of prognosis based on the MRI, and that was the correct response. It is frustrating, like everybody newly diagnosed, I wanted to know whether I would be "lucky" or "unlucky", whether I should start any treatment or just wait, etc. I've gone two years with no major problems although I cannot claim to be totally 100% symptom-free. In general, I think my overall health is better than it was for at least a year before the diagnosis, but that could all change. Or I could just continue on like I am. Or maybe I could better, but I'll have to work at it at this point, sitting around won't gain me anything. I was seeing my neuro quarterly, now it is semi-annually. That has given me some encouragement. And like you, I had lots of spots on the MRI. Does it make any sense there is no good correlation between the MRI and symptoms? No. I've read reports that people who have had whole body scans for something unrelated have shown up with lesions on their brain and they've never had any CNS symptoms at all.

In your case, you are taking Rebif and have been over the last year, so you and your doc have some extra incentive to see what is happening on the inside - if you have had no symptoms for a year that is very good. No one can say for the long-term outcome, but it is definitely good right now, and focus on that. It could be due to the natural course (or non-course) of the disease in you, or it could be you are having a good response to the Rebif - either way, that is good. Your lack of symptoms is more important than the MRI in my opinion. People can have normal looking MRIs and a lot of disability, and vice versa, as Amelia and others have said. However, If I were to actually bet, I'd wager your second MRI will look better. I certainly hope so. Keep us posted. You've got us curious.

Lisa
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Postby viper498 » Fri Jul 07, 2006 9:54 pm

I will certainly let you all know what my MRI looked like. I appreciate the feedback I did get a great deal. I totally agree with everyone on the subject of MRI images not correlating to Disability, or even being a predictor of disability to come.

Thanks again to all of you!

Brock
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Postby viper498 » Sat Jul 08, 2006 7:21 pm

In doing research I came across a cool site where you can see actual MRI's of patients and their problems, sometimes with detailed notes. I searched MS, none of the lesions looked like what my MRI looked like. I finally found one though. See link: My MRI looked VERY much like this one (speaking of Fig.1, and Fig.2).

<shortened url>
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Postby viper498 » Sun Jul 09, 2006 10:26 am

Did any one have lesions or lesion pattern that looks similar to what is in the above link?
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looks like mine

Postby jimmylegs » Sun Jul 09, 2006 4:09 pm

mine are like that, v. i also refer to fig 1 and 2. i don't have quite as many but they are pretty scattered like that. i suppose in another 10 years (i'm 35, subject is 46) mine could look like that too if i don't take action.

i do have a little pericallosal array (that's my own jargon) known as "dawson's fingers" - anyone else had their mri tech make that note? they are apparently a real signature of ms. whatever that means.

i find it extremely interesting that the scan you linked to, v, refers specifically to candidiasis. i am a candida poster child, now apparently my mri can be on the poster too lol!

i wonder if any dawson's fingers would show up on this subject's mri - but you have to slice vertically and view from the side to see them.
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