any rocket scientists out there? Anyone who can decifer MRIs

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any rocket scientists out there? Anyone who can decifer MRIs

Postby kibibikel » Fri Jan 06, 2012 12:00 pm

So, I've just had my new MRI, and for the life of me I couldn't figure it out. I tried translating it into english from russian, german, pig latin. I even went so far as to using the davinci code thinking it was in some sort of secret society code but nothing worked lol. Alright so seriously, my neuro is telling me I need to switch from copaxone to tysabri asap because of my mri results. So just for a little backround, I had an MRI in April and it showed 9 lesions in my brain. This was my first MRI. I just had another one the end of Novemeber and it shows "no fewer than 22 new lesions" but 5 of the ones that I previously had decreased in size and a couple completely disappeared. I've only been on Copaxone since July... So I guess my question is what the hell? Lol my neuro won't actually explain to me what all that means. Is it bad I have that many? Is it good that they decreased in size? Gaaah I'm so frustrated with this gobbeldygook.
If any of you have the magic decifer code to MRIs I would appreciate it soooooo much!!! :-D
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Re: any rocket scientists out there? Anyone who can decifer

Postby MarkLavelle » Fri Jan 06, 2012 1:19 pm

If my neuro wouldn't explain my test results or why I should take a particular DMD I would find a new doc ASAP. Preferably one at a major MS clinic...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: any rocket scientists out there? Anyone who can decifer

Postby Loriyas » Fri Jan 06, 2012 1:35 pm

I second Mark's suggestion. You need a neurologist who is willing to explain your MRI results to you to your complete satisfaction. If some lesions are new but others have disappeared you need to understand that more completely. For instance, were both MRIs done on the same machine? Were both done with and without gadolinium? If it were me I would find a new neurologist with whom I felt comfortable and go from there. I would not automatically switch to Tysabri until I thoroughly understood the necessity. If you have been on Copaxone only since July and some lesions truly have disappeared then perhaps Copaxone has begun to work. If there are truly new lesions and they are many then you may decide to try something different. But make sure the MRI results are comparing "apples to apples" so to speak. And you may want to research other medications to see if you want to make a switch to them instead of going straight to Tysabri.

A lot of this depends on your symptoms. Do you feel they are worsening or have you felt improvement? Think everything through, find a new neurologist and go from there. I am not saying to take your good old time but reacting without complete knowledge is also not helpful. Take a deep breath, put a plan together, research options and then you will able to make the best decision. And remember that you can always make adjustments in the future if necessary.
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Re: any rocket scientists out there? Anyone who can decifer

Postby lyndacarol » Fri Jan 06, 2012 6:07 pm

I encourage you to read tzootsi's posting: general-discussion-f1/topic18916.html

Many people with MS show NO lesions for many years at the beginning of the disease; upon autopsy many lesions have been found in perfectly normal people who had no MS symptoms during their lifetimes. I wonder if lesions play ANY role in the symptoms we experience. The human body repairs itself resulting in scars; most frequently these do not interfere with function (my childhood scars from falling on my knees do not impede bending my knees). Burn scars are another matter.
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Re: any rocket scientists out there? Anyone who can decifer

Postby kibibikel » Sun Jan 08, 2012 6:26 pm

Thank you everybody, you have given me some serious food for thought. I've been trying to learn as much as I can but only being diagnosed in April its pretty overwhelming. At this point I believe I will be holding off on the switch to Tysabri until I have a chance to actually talk to the MS neurologist.
Thanks again!!
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Re: any rocket scientists out there? Anyone who can decifer

Postby Maledicte » Sun Jan 08, 2012 6:49 pm

No 'fewer than 22?'
Have you tried rebif? (I know I'm sounding like
a salesman) but our meds are supposed to stop/slow down new lesions
And the fact your neuro won't discuss it?
Show him middle finger (sorry if I offended anyone w/that)
and pls find a new one
I had a HORRIBLE one (she NEVER called, just her nurse, if I wanted
to speak to her I had to pay - she knew I had no insurance
and charged over $400, my new neuro is *$50* and talks to me and is very explanatory about MRI's)
So, my 5 cents, find someone else - you can search online and read reviews about doctors/specialists
You deserve better treatment
http://www.etsy.com/shop/Maledictesjewels
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