Aa
Tysabri
Hi everyone! It's been a bit. I have been busy with life - moving to Portland and trying to acclimate. We LOVE Portland. It's gorgeous and we happen to pick a community that really feels good to live in. :)
I have been running. I started in January and am now running about 5 miles, 3 times a week. I am very happy with my progress and hope to run the Portland Marathon (1/2) in October. I am not a fast runner but I am running and happy with my progress.
I figure. I am running for any amount of strength I can gain before another flare knocks me back.....and for all of us who struggle. It took me nearly 2 years to feel stable. I am hoping for strength in recovery.
I haven't established care down here just yet. (Yes, please yell at me since I realize I am risking myself.) I just can't seem to focus on doctors right now. I have been on Avonex for about a year. I am doing really well on it. No side affects at all but I was thinking of making my Neuro appt. and asking about getting tested for the markers with Tysabri.
The reason is - I am concerned about my significant vision issues. I think Tysabri has shown to improve symptoms and promote healing affects. I would really like some stability and peace of mind with regard to my vision. I am concerned if lesions attack my left eye I might not be able to drive (especially at night) as I already have trouble with this.
Thoughts?
I have been running. I started in January and am now running about 5 miles, 3 times a week. I am very happy with my progress and hope to run the Portland Marathon (1/2) in October. I am not a fast runner but I am running and happy with my progress.
I figure. I am running for any amount of strength I can gain before another flare knocks me back.....and for all of us who struggle. It took me nearly 2 years to feel stable. I am hoping for strength in recovery.
I haven't established care down here just yet. (Yes, please yell at me since I realize I am risking myself.) I just can't seem to focus on doctors right now. I have been on Avonex for about a year. I am doing really well on it. No side affects at all but I was thinking of making my Neuro appt. and asking about getting tested for the markers with Tysabri.
The reason is - I am concerned about my significant vision issues. I think Tysabri has shown to improve symptoms and promote healing affects. I would really like some stability and peace of mind with regard to my vision. I am concerned if lesions attack my left eye I might not be able to drive (especially at night) as I already have trouble with this.
Thoughts?
I have talked to Piper and gotten referrals. I have even taken the steps to pick one. lol I just haven't made the call.
I am a bit overwhelmed with everything associated with moving, new job, etc. so I have let this go. I NEED to get on it though!
I didn't talk to her about Tysabri. I will likely talk to my new doctor. It's just something swarming around in my head. ;)
I am pretty proud of myself about running. My mind is playing some tricks on me with wondering if I have the ability to do a half marathon in 4 1/2 months. I also can't believe I am running 5 miles easily now. :) Just trying to be healthy and hoping that it will help me fight this a bit more.
I am a bit overwhelmed with everything associated with moving, new job, etc. so I have let this go. I NEED to get on it though!
I didn't talk to her about Tysabri. I will likely talk to my new doctor. It's just something swarming around in my head. ;)
I am pretty proud of myself about running. My mind is playing some tricks on me with wondering if I have the ability to do a half marathon in 4 1/2 months. I also can't believe I am running 5 miles easily now. :) Just trying to be healthy and hoping that it will help me fight this a bit more.
I wanted to cheer for you, when I read about the running! As for the tysabri, I don't yet have any personal experience with it, but I have a few friends locally that have had very good success with it.
There is some evidence that it helps to stabilize, and even to repair some of the damage. Of course, not all patients will experience the same results. After speaking with people I know, that are on it, and doing my own research- the benefits associated with Tysabri sound potentially good. Why don't you just put in a call to Piper, at VM? She can give you reliable information, and they may even be able to recommend a good neuro in Portland.
Tammy
There is some evidence that it helps to stabilize, and even to repair some of the damage. Of course, not all patients will experience the same results. After speaking with people I know, that are on it, and doing my own research- the benefits associated with Tysabri sound potentially good. Why don't you just put in a call to Piper, at VM? She can give you reliable information, and they may even be able to recommend a good neuro in Portland.
Tammy
As for Tysabri, I am curious if I might be able to get more stability and my vision is my primary concerns.
Experiences?
Experiences?
Thank you all ~ :)
Shell, It feels super good to gain strength! I am reminded about how walking up 10 stairs was a work out for me at one point. Now, I can make those without feeling much fatigue, if at all, except some times a bad day. Running seems to be really good for me. I have to do so outside as then I can manage the heat intolerance easier but it is definitely helping me overall. :)
When was my last attack? Good question. I have probably had about 3 or 4 that I can count but they were smaller ones and not like the one that knocked me out for the year (course, I did more attacks on top of it.) I had to go back on IVSM last August and I had another attack a couple weeks ago that lasted a few days of new symptoms. I tend to ignore them a little bit now unless they really affect something. The last one was left sided ear issues.
My vision issue is ongoing but also fluctuates. I have double vision in both eyes but my right eye is the one that has a contrast scotoma as wells as pretty significant vision loss. One of the weirdest issues is depth perception. I lost that in my right eye. That poor eye!!! lol I am doing OK but I try not to drive at night. I can't see well enough.
I also have some issues with the atypical TN on that side of the face/eye too. So, on a bad day then I have some mild pain, vision issues and feeling unbalanced because of the depth perception loss. Oddest dang thing!
Shell, It feels super good to gain strength! I am reminded about how walking up 10 stairs was a work out for me at one point. Now, I can make those without feeling much fatigue, if at all, except some times a bad day. Running seems to be really good for me. I have to do so outside as then I can manage the heat intolerance easier but it is definitely helping me overall. :)
When was my last attack? Good question. I have probably had about 3 or 4 that I can count but they were smaller ones and not like the one that knocked me out for the year (course, I did more attacks on top of it.) I had to go back on IVSM last August and I had another attack a couple weeks ago that lasted a few days of new symptoms. I tend to ignore them a little bit now unless they really affect something. The last one was left sided ear issues.
My vision issue is ongoing but also fluctuates. I have double vision in both eyes but my right eye is the one that has a contrast scotoma as wells as pretty significant vision loss. One of the weirdest issues is depth perception. I lost that in my right eye. That poor eye!!! lol I am doing OK but I try not to drive at night. I can't see well enough.
I also have some issues with the atypical TN on that side of the face/eye too. So, on a bad day then I have some mild pain, vision issues and feeling unbalanced because of the depth perception loss. Oddest dang thing!
Hi SS,
SOO nice to see you and read your update here. Congrats on your increasing stamina! Will definitely not hound you about the doctor - you'll get to on there in your time. I've done a fair share of doctor skipping myself in a years time - been focused on getting strength myself. It feels good though doesn't it?
When was your last attack? And, is the eye issue ongoing? Or, does it come and go. I'm glad to hear you are doing well on Avonex, this is an important consideration for you and your doctor when considering a switch.
I do wish you well with your journey toward the marathon! And, with your eyes - seems even w/out MS the 40s come with a whole set of eye issues, or everyone has to stop shrinking and blurring all the print on everything haha
Very nice to see you and- Hope more stop by with thoughts.
(((hugs)))
shell
SOO nice to see you and read your update here. Congrats on your increasing stamina! Will definitely not hound you about the doctor - you'll get to on there in your time. I've done a fair share of doctor skipping myself in a years time - been focused on getting strength myself. It feels good though doesn't it?
When was your last attack? And, is the eye issue ongoing? Or, does it come and go. I'm glad to hear you are doing well on Avonex, this is an important consideration for you and your doctor when considering a switch.
I do wish you well with your journey toward the marathon! And, with your eyes - seems even w/out MS the 40s come with a whole set of eye issues, or everyone has to stop shrinking and blurring all the print on everything haha
Very nice to see you and- Hope more stop by with thoughts.
(((hugs)))
shell
It's great to see you pop up here - and even better that you are happy with the move. The pacific-northwest should be the ultimate destination for us all, with its perfect MS climate. The beautiful scenery is just a bonus.
The switch to Tysabri might be a good one for you - breaking in a new neuro and getting that conversation going is the next step. Good luck! Laura
The switch to Tysabri might be a good one for you - breaking in a new neuro and getting that conversation going is the next step. Good luck! Laura
Hi SS - Congrats on your move to Portlandia. Even bigger congrats on getting back in your running shoes! Keeping our bodies as strong as we can is really important.
As to Tysabri's healing powers I'm not so sure. I am sure that it is effective at dramatically slowing the progress of MS. I'v had 18 infusions and Tysabri is the only DMD I've used. Since starting Tysabri I've seen no appreciable worsening of my MS.
If I can stay where I am now I'll be very happy. I would imagine your would be too, if Tysabri allows you to maintain your current level of ability :-)
Kyle
As to Tysabri's healing powers I'm not so sure. I am sure that it is effective at dramatically slowing the progress of MS. I'v had 18 infusions and Tysabri is the only DMD I've used. Since starting Tysabri I've seen no appreciable worsening of my MS.
If I can stay where I am now I'll be very happy. I would imagine your would be too, if Tysabri allows you to maintain your current level of ability :-)
Kyle
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