MRI Results - opinions

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MRI Results - opinions

Postby patientx » Thu Apr 09, 2009 2:16 pm

I've only been at this about a year, so I'm a rookie compared to most here. I just got my latest MRI results, so I thought I would ask opinions. This MRI showed a new small spot (don't know exactly the size) in the frontal lobe of the brain, as compared to the MRI 6 months ago. My MRIs up til now have shown no changes (3 in the past 12 months). No lesions, including the latest, have enhanced. I haven't had any major relapses, but lately my symptoms (numbess, tingling, legs and arms get tired easily) have intensified.

Is this something I should be overly concerned about? I've been on Copaxone for 6 months, now. I've read all over the place that it takes 6 months to kick in, though I don't know if this is fact.

I could accept the fact that it's a small new lesion, and this isn't uncommon in the early course of the disease. But something that the MS clinic said kinda bothers me: that Copaxone is only advertised to reduce relapses by 30%, and that's all I should really expect. Seemed like a laissez-faire attitude. Should I be looking at trying to be more aggressive? Some of the neuros I read about think that no new lesions should be dismissed, and that with any changes on the MRI, a change in therapy may need to be considered.
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Postby jimmylegs » Thu Apr 09, 2009 3:47 pm

hi i guess the consensus is that the lesions don't have a heck of a lot to do with edss at the end of the day..

anyway, one of the things copaxone is supposed to do is increase your uric acid level: http://msj.sagepub.com/cgi/content/abstract/6/6/378

do you know what your serum uric acid has been over the last while? serum ua is a decent indicator of disease process and optimizing your level might help you out too, according to some recent research.

i don't take copaxone, but i have been trying to get my uric acid level optimized by correcting previously deficient serum zinc. getting your zinc up to par boosts the uric acid and is also used by your body for myriad other processes. my old serum UA levels were ms average (194) and below (188), and i'm going in next week to find out if i've corrected them any with zinc. from the studies i've looked at uric acid in healthy controls is 290-300 umol/L. gout starts up around the UA=360 mark.

so as to getting more aggressive, i would say that depending on your current levels for zinc and UA, perhaps a little zinc treatment could help your copaxone do an even better job.

HTH
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Postby chrishasms » Thu Apr 09, 2009 8:10 pm

That 30% chance of working is the exact reason I chose the Revimmune. I figured it would either kill me or end the progression but there was not a 70% failure rate. I still wish to hell I was one of the lucky ones to be able to pop a shot and control the MonSter but I wasn't.

I will tell you my neuro's all said my lesions were small yet I kept getting worse and worse so even though they loved my MRI's it meant nadda, zero, zilch to me.
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Postby patientx » Thu Apr 09, 2009 9:13 pm

Hey JL,

Thanks for the reply. I've never had my UA level tested. I've been thinking about scheduling a physical soon, if for nothing else to check my vitamin D and B levels. I can ask to add the UA.

I guess my question was more, for those that have gotten regular MRIs, is one new lesion without major clinical signs, a big deal? I realize that most say that there isn't much correlation between lesion load and symptoms/disability.

I know you decided not to go the pharma route, but do you still get MRIs?
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Postby patientx » Thu Apr 09, 2009 9:20 pm

Chris,

I understand what you're saying. And to be honest, I think I would be willing to be a guinea pig for an experimental treatment, like Revimmune or Campath. Which is why I posed the question. Should I start considering seeking out a clinic that might offer one of these more aggressive treatments? Or am I too early into this, and that MRI isn't that big of a deal?
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Postby jimmylegs » Thu Apr 09, 2009 9:37 pm

yep i have had a followup brain and spine mri, in late 2007. at that time they found some activity in one particular brain lesion that had been there at dx. i could feel that one - it was during the time i was super zinc deficient. i haven't felt that particular lesion in over a year now. i'm not sure when i'll get another mri, because i don't think i booked another 1yr followup after last mri. but if i did get one more set of brain and spine mri, i think they would probably look not bad :)
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Postby patientx » Thu Apr 09, 2009 9:42 pm

jimmylegs wrote:yep i have had a followup brain and spine mri, in late 2007. at that time they found some activity in one particular brain lesion that had been there at dx.

Do you mean a previously seen lesion showed enhancement?

Up pretty late, aren't you? :)
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Postby chrishasms » Fri Apr 10, 2009 6:40 am

Well I am a huge fan of getting rid of this ASAP. In fact if either one of those treatments you mentioned were available when I was first diag'd when I wasn't that bad yet I would have jumped on one of them.

To illustrate early treatment: I ran into a woman about 50 in the hospital elevator where I do my PT and the neuro I go to locally is. She recognized me because of my site which kinda creeped me out lol. She could walk and run and she was in the process of having both Rush and JH look over her records. She was not interested in waiting until she was wheeling herself around like me to get better.

I want to reiterate something many folk don't get. Revimmune is not like Campath. Campath stays in your body for ages where Revimmune is gone within 48 hours of the last dose. You do get sick from Revimmune initially but folks will tell you they are back to feeling normal (tiredness is gone) within 3 months while Campath may take months. Also, for me, the four days I was sick still was better than I ever felt the 2 days following a shot of Avonex- plus this is 95% shot of effectiveness first dose (and appears to be closer to 100% after a second dosing if needed), not a 30% chance you MAYBE will slow it up.

But if your MS isn't that bad you may want to go with something else. Just remember - nothing with this disease is easy or guaranteed so make whatever decision you make with careful knowledge.
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Postby Needled » Fri Apr 10, 2009 6:59 am

activity in one particular brain lesion that had been there at dx. i could feel that one - it was during the time i was super zinc deficient. i haven't felt that particular lesion in over a year now.

Jimmy, What do you mean by being able to feel the lesion? Sometimes I get this weird feeling in my head, not a headache or anything, just an odd tingling/swishing sensation.

I’ve been on Copaxone for three years. I had an MRI a year after I started, and there were no new lesions in my brain or spine. So there’s the good news. It’s either working for me, or nothing is happening (if you discount the brain tingling!) that's affected me outwardly.
Sorry to sidetrack the post a little, but back to part of the original question -- all of the CRABS claim somewhere around 30-35% effectiveness in slowing progression. I think I even saw a 40% number somewhere, but I dismissed that as pure propoganda.
N
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Postby jimmylegs » Fri Apr 10, 2009 8:03 am

hi px i did not have gadolinium for the second mri but they could see that even though there were no new lesions, one particular one was bigger.

and it wasn't even pumpkin time last night - what time zone are u in?? lol

needled, i could feel it as a kind of tension or strain when i tried to process movement like relative speed of things on the road etc. it was sort of like a pulling feeling deep behind my left eye. almost lost my license.
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Postby patientx » Fri Apr 10, 2009 8:29 am

JL,

That makes sense.

I'm on the east coast. I noticed last night that you had posted something new just as I was getting ready to shut down for the night. I forgot that you might be in western Canada.
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Postby jimmylegs » Fri Apr 10, 2009 8:35 am

yep western relative to the east coast for sure. GMT-5 here. and i was almost ready to shut down too :)
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Postby ssmme » Fri Apr 10, 2009 9:19 am

I have a question about lesions also. Do all lesions enhance at times like during original growth or do some lesions never enhance. I know an mri is just a picture at a specific moment in time but at some point do all lesions enhance? I have had about 10 mri's but I am not aware that any lesions were ever enhancing at mri time even though I have had new lesions appear over time.

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Postby patientx » Fri Apr 10, 2009 9:49 am

That's a really good question, Marcia.
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Postby LR1234 » Fri Apr 10, 2009 10:46 am

my lesions have never enhanced either. I thought that meant a progressive disease but I have been dx with RRMS.
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