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80+ lesions,5 larger than 1 cm, What does this mean?????

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Posted 1/25/2012 6:20 PM (GMT 0)
Well,I went back 2 the eye doc yesterday because the neurologist told me to go and let him check my vision. I said it before but I had severe optic neuritis and spent 6 days in the hospital, 5 days of iv steroids. Anyway, the neuro never showed me my mri's, but she sent the eye doc the report. He was asking what all happened, how was I doing, etc. and started reading the report. He said the report said I had over 80 lesions and 5 larger than 1 cm. 1 larger than 1.5 cm.

Does anyone know what this could mean, or even heard of this many lesions? I have googled it and all I see is people talking about 5 or 10. I feel pretty good and most of my vision came back(20/25). So I can't complain. I just don't know who else to ask about this. I see the neurologist 2/14/12 and will definitely ask her but if anyone has ever heard or experienced this please fill me in. Nikki
Posted 1/26/2012 3:28 AM (GMT 0)
Nikki,

I believe it is more about the location of the lesions.  My MRI reports never had a final number either--last count was 40+ with several over 1 cm.  At that point my episodes were very tame--I usually just passed out for a short while but was fine within a day or two.  My last episode was in Mar 2011 and it was a large lesion on the brain stem.  Life has pretty much sucked since then.  I was on Capaxone but I switched to Tysabri after the last episode. 

I have heard of autopsies on people that had lived long, healthy lives that found numerous brain lesions when the member was never known to have any symptoms and was never diagnosed with a disease.  I think that reinforces the idea that it is the location of the lesions, not amount or size.

Frank

 

Posted 1/26/2012 5:20 AM (GMT 0)
Thank you for your reply. I'm not sure exactly where the lesions are located yet, but I guess all I can do right now is try to stay positive. I'm starting the Copaxone any day now. I read where you changed from that to Tysabri. Did changing meds help, or just keep things from getting worse? I really do appreciate your input, especially since I have been online all day and can't find anything about over 10 lesions. Everything I'm reading people have like 5-10 at most. I did come across some very depressing stuff about how long most patients have before being unable to walk. It said 75% were still walking 10 years after diagnosis, 40% still walking 15 years after diagnosis. I'm still trying to wrap my head around all this. I need to remember all the things I have to be thankful for instead of spending so much time worrying.

Nikki
Posted 1/27/2012 2:40 AM (GMT 0)
My doctor suggested the change because I had the bad episode about 4 months after starting the Copaxone. It seems people react differently to treatment--some people swear by Copaxone. For instance, unlike you, I do not respond well to steroid infusions. I have taken 3 steroid treatments and I will never take one again.
I try not to worry about the bad things that might happen. I was very healthy before this last episode. And I still believe I will get back there eventually. I've heard a lot of good stories on Tysabri--about how many people have reported sympton improvement and how lesions actually disappearred. Of course there are bad stories too...

Frank
Posted 1/27/2012 3:31 AM (GMT 0)
i had to reply to this one. i have had ms for 28 yrs. now..i always thought that i only had 3 lesions boy was i wrong...i was on avonex, rebif, the iv steroids..now i am on tysbari....it is working while the lesions havent disappeared they are no longer illuminated which is a good thing...i did really good until 3 years ago..flare up after flare couldnt do interferons any more so i had to do tysabri..i have the jc virus which makes it dangerous after 2 yrs. i have 5 months to find another treatment...i am hoping an oral treatment will help too...i dont get around as well as i used to but i feel i am luckier than some..and no flares since i have been on it...it will be trial and error for all of us until they can figure out what we can tolerate..and there are more orals waiting for fda approval...take care and sorry i rambled on like that....barb
Posted 1/27/2012 4:28 AM (GMT 0)
Thank you, Barb and Frank, for your input. I am doing pretty good, haven't started the Copaxone yet, I assume by monday it will be here. Only time will tell I guess. It is good to know that there are other options if it doesn't work though. Has anyone taken Ampyra, the neuro ordered that for me too. I googled it, and it said it is for difficulty walking, and the side effects included making MS worse and causing relapses, among other things. I don't have difficulty walking (knock on wood) so I will definitely ask her about it.

Nikki
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