So when I was first diagnosed, I had very few symptoms in between exacerbations. For the first year, if it wasn't for the side effects of the Avonex, and my problems from my fibromyalgia, I would have felt great. Last year, I wasn't doing bad. I would have my bad times when I was coming down with something, and I was weak, but that was it, other than frequent nerve pain in my skin.
Now, for at least the last 5 months, I have constant symptoms - every symptom I've ever experienced, except for the seizures (which are controlled by medication). It used to be that if my arm "went out" with weakness, pain, numbness in my hand, etc., I was having a flare - that only happened in a flare. But now, anything is up for grabs, evidently. Every symptom that I have only had in an exacerbation is something I can feel on any given day. I wrote things off as medication changes, I came down with something, but it's been continuous since December - to the point where my mother-in-law is back to asking how I am the first thing when she calls (and she has a broken femur and wrist right now).
I have no clue how to figure out if an exacerbation starts. I thought I was having an exacerbation, finally got into the doctor three weeks later (when the new symptoms were gone completely), and she made me feel like I was wasting her time, and that I'm doing so much better than a lot of her patients (yes, I know I'm lucky) and I just have to get used to it. Huh, guess it wasn't an exacerbation (MRI was negative).
I guess my question is how many of you have ALL of your symptoms going in and out on a daily basis like this? At this point, I don't really know what to do, as I've never been like this before. I'm on Tysabri now, and she said the Tysabri doesn't have anything to do with symptom management. I'm on Baclofen, but it's not doing a great job, Elavil, fioricet (for both the ms and fibro), as well as meds for other stuff.
Now, for at least the last 5 months, I have constant symptoms - every symptom I've ever experienced, except for the seizures (which are controlled by medication). It used to be that if my arm "went out" with weakness, pain, numbness in my hand, etc., I was having a flare - that only happened in a flare. But now, anything is up for grabs, evidently. Every symptom that I have only had in an exacerbation is something I can feel on any given day. I wrote things off as medication changes, I came down with something, but it's been continuous since December - to the point where my mother-in-law is back to asking how I am the first thing when she calls (and she has a broken femur and wrist right now).
I have no clue how to figure out if an exacerbation starts. I thought I was having an exacerbation, finally got into the doctor three weeks later (when the new symptoms were gone completely), and she made me feel like I was wasting her time, and that I'm doing so much better than a lot of her patients (yes, I know I'm lucky) and I just have to get used to it. Huh, guess it wasn't an exacerbation (MRI was negative).
I guess my question is how many of you have ALL of your symptoms going in and out on a daily basis like this? At this point, I don't really know what to do, as I've never been like this before. I'm on Tysabri now, and she said the Tysabri doesn't have anything to do with symptom management. I'm on Baclofen, but it's not doing a great job, Elavil, fioricet (for both the ms and fibro), as well as meds for other stuff.
Comment