So, I've been on Tysabri for 24 infusions now. I've experienced no side effects that I know of. I can't see where I feel any bump when I get the infusion or any lags when I'm due. I feel the same. Doctor says MRIs are stable and I'm not progressing.
Now with all that said I've gone through so many ups and downs since the first infusion in September '15. I still feel in my case my trigger is hormones. The last two months or so I've actually felt consistent in feeling one way. I've also for what ever reason actually feel better MS speaking. Symptoms are still there but there's been subtle improvement just in the last month or so.
Question: has anyone ever reported symptom improvement after 2 years of treatment? I thought after 6 months if takes full effect. I know MS is mysterious and it basically does what it wants.
I'm just thankful my crazy, feeling better one day feeling like I'm in a relapse (when I'm not) the next has stopped (at least for now). The changes made are that I'm taking more Vitamin D than I was and I believe began actual menopause vrs Peri menopause. I started to take a low does birth control pill that has the same level of hormones daily and I don't interrupt them for a week. I keep taking them.
I share this info in case it can help someone else. My " improvement" isn't earth shattering or anything but I do feel more " normal" in how I feel/move. My head feels more "settled" and I just am moving more intuitively and coordinated. And when I'm relaxed Is feeling more normal with that. My symptoms are mostly sensory and all in my brain. They're very very hard to describe. I do have some mild motor symptoms of weakness and control and that has improved to some degree.
I realized this is maybe actual improvement when I went to clean up a spill on the floor with a towel and without thinking I bent down, at the knees, not over, and wiped it up like I use to be able to. The last 2 years with the dizziness/balance you do things differently than what you did before. It's as if I'm doing without thinking about how I need to adjust to it, if that makes sense.
I still work full time (doing hair) 12 hr days, 4 days a week and have not missed a day, slowed down nor has the quality of my work changed. I alone notice differences and I do struggle but it doesn't effect my ability. The most important thing I realized is MS doesn't make you move faster or better over time but the opposite. I can honestly say speed has improved so I'm thinking that's huge. Now watch I regress since opening my big mouth...
So, again is it steady level of hormones? Is it an increase in Vitimin D? Who knows. I haven't talked to Doc to get his opinion yet but will soon.
I hope everyone else is well. I check in now and then to read posts and be updated.
I was also wondering if anyone here has switched or thought about switching to the new Ocrevus? My Doc said I could switch if I want but it won't necessarily mean it'll work better than Tysabri. I was also wondering about Lemtrada. What would be the benefits of switching to that? I guess if something isn't broken, I shouldn't fix it. Tysabri seems to be working well. I should consider myself lucky. Thanks for "listening".
Now with all that said I've gone through so many ups and downs since the first infusion in September '15. I still feel in my case my trigger is hormones. The last two months or so I've actually felt consistent in feeling one way. I've also for what ever reason actually feel better MS speaking. Symptoms are still there but there's been subtle improvement just in the last month or so.
Question: has anyone ever reported symptom improvement after 2 years of treatment? I thought after 6 months if takes full effect. I know MS is mysterious and it basically does what it wants.
I'm just thankful my crazy, feeling better one day feeling like I'm in a relapse (when I'm not) the next has stopped (at least for now). The changes made are that I'm taking more Vitamin D than I was and I believe began actual menopause vrs Peri menopause. I started to take a low does birth control pill that has the same level of hormones daily and I don't interrupt them for a week. I keep taking them.
I share this info in case it can help someone else. My " improvement" isn't earth shattering or anything but I do feel more " normal" in how I feel/move. My head feels more "settled" and I just am moving more intuitively and coordinated. And when I'm relaxed Is feeling more normal with that. My symptoms are mostly sensory and all in my brain. They're very very hard to describe. I do have some mild motor symptoms of weakness and control and that has improved to some degree.
I realized this is maybe actual improvement when I went to clean up a spill on the floor with a towel and without thinking I bent down, at the knees, not over, and wiped it up like I use to be able to. The last 2 years with the dizziness/balance you do things differently than what you did before. It's as if I'm doing without thinking about how I need to adjust to it, if that makes sense.
I still work full time (doing hair) 12 hr days, 4 days a week and have not missed a day, slowed down nor has the quality of my work changed. I alone notice differences and I do struggle but it doesn't effect my ability. The most important thing I realized is MS doesn't make you move faster or better over time but the opposite. I can honestly say speed has improved so I'm thinking that's huge. Now watch I regress since opening my big mouth...
So, again is it steady level of hormones? Is it an increase in Vitimin D? Who knows. I haven't talked to Doc to get his opinion yet but will soon.
I hope everyone else is well. I check in now and then to read posts and be updated.
I was also wondering if anyone here has switched or thought about switching to the new Ocrevus? My Doc said I could switch if I want but it won't necessarily mean it'll work better than Tysabri. I was also wondering about Lemtrada. What would be the benefits of switching to that? I guess if something isn't broken, I shouldn't fix it. Tysabri seems to be working well. I should consider myself lucky. Thanks for "listening".
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