baddoey
12-12-2005, 02:11 AM
I just got my results back from my latest MRI - 2 new lesions in the last year, since my MRI Nov of 04 - my neuro is a little concerned but wants to give it another 6 months on the copaxone and do another MRI - i don't know what to think - I don't feel like my symptoms have gotten any worse, but I just don't know if I should let it go any longer before I do anything else. She was talking about an oral steroid to try and slow it down - she said not to be too concerned, but that is sort of impossible. UG UG UG. . . any thoughts?
Sponsor
revlcb
12-12-2005, 08:07 AM
From what I've read, Copaxone can take up to six months to begin working fully. So waiting another six months may not be out of the question. The 2 new lesions may have happened when you just began the medicine. You might want to give Copaxone time to do it's job then wait another 6 months and redo the MRI. Then if you see any new sx or paraclinical evidence, I'd switch to a beta.
Lisa
Lisa
baddoey
12-12-2005, 11:05 AM
thanks for the reply and the advice. . I guess I will see how it goes - just such a bore to have to give myself a shot and have it not work. I think I am having a depressing monday. Oh and my neuro said that she doesn't think she is going to perscribe Tysabri to any of her patients - she is concerned about PML even as a stand alone therapy over the long term. Has anyone else gotten any feedback from their neuros if the tysabri is approved?
dje27
12-12-2005, 12:27 PM
I have a question. Where are your lesions? Are they in certain parts? I have lesions all over. Parietal lobe, white matter lesions. New ones keep popping up. I dont even have a dx yet. Just curious what makes neuros make the diagnosis. I also have symptoms but he still isnt convinced.
Thanks
Thanks
baddoey
12-12-2005, 12:53 PM
oh gosh - I'm not sure where they are. my symptoms are sort of mild at this time - pins and needles, headaches and facial numbness. . I have quite a few lesions, but they are small. sorry to hear that you don't have a dx yet - often that happens.
lilc
12-13-2005, 07:27 PM
Baddoey, I'm sorry to hear about the new lesions. I've just started my second month on Copaxone, am SOOO hopeful it will work for me. While the daily shots are a drag (just got home from my 4th trip in the last 5 weeks) I'm so grateful they don't give me the dreaded "flu-like symptoms". Don't know for sure how I'll feel if I get the same news in 5 months, but my sx are also pretty mild, I think I'd give it another 6 months. I'll keep you in my prayers.
baddoey
12-14-2005, 11:13 AM
lilc - I hope things work out for you! . . sounds like we are sort of in the same boat right now - very mild symptoms. My MS doesn't stop me from anything physical right now, I do get down about the future sometimes. My family lives far away so its hard for me as far as a "support system" - plus I feel like a jerk complaining when i can still do everything.
anyway - fingers crossed for you!
anyway - fingers crossed for you!
evolution88
12-14-2005, 11:29 AM
badoey,
Don't get down about the future, try and be positive. Remember that ten years ago there were no drugs to help people like us. Today there are four on the market, there are at least two more being worked on that are significantly more effective than the current drugs.
This is all before the companies start working with stem cells which hold great promise for us.
I try and look at it this way, if I can just hold out for five years the drugs will be much better and more effective.
ron
Don't get down about the future, try and be positive. Remember that ten years ago there were no drugs to help people like us. Today there are four on the market, there are at least two more being worked on that are significantly more effective than the current drugs.
This is all before the companies start working with stem cells which hold great promise for us.
I try and look at it this way, if I can just hold out for five years the drugs will be much better and more effective.
ron
baddoey
12-14-2005, 03:41 PM
thanks for the support - I really do appreciate it.
I have my good days and bad ones - some days I feel like a fighter and then other days I feel very overwhelmed by the whole thing. my family lives overseas and while they try and be supportive - sometimes it just doesn't come out right.
I have my good days and bad ones - some days I feel like a fighter and then other days I feel very overwhelmed by the whole thing. my family lives overseas and while they try and be supportive - sometimes it just doesn't come out right.