New Maybe

[toot2818]

Tortis, how did it go? I'm going on #4 and have had no problems. MS center I go to had TVs in each room. Two hours goes fast-they check my BP at start, end of TY infusion and then again at end of saline hour. They also offer drinks-soda, coffee, water.

[tortis]

Update 1st. Infusion

Hi everyone, well I finally got it done. I am really tired and my legs feel like rubber today but the headache is really bad I have a atypical T.N. headache all the time but it threw a migraine type headache on top of it, started half way through the infusion but hopefully will let up tomorrow or sooner. My cns dizzines is also worse but the valium has helped that. I actually am the most concerned that it has flared my prostate up and it burns a lot to go, hopefully everything will ease up tomorrow. Hitting the wall right now so gotta go.

PEACE
Tortis

[tortis]

Update day 2

Hi everyone, Thanks for the response yesterday toot. I was just to out of it to respond.
My legs are still very weak and I still have a very bad headache but less than yesterday and I pretty much always have a headache. My urinary problems are also still there but also a little better, I no longer have to hold on to something now its down to a manageable burning. I have developed pretty severe diarrhea overnight though could just be some of my ongoing Bowell problems but I do not remember that as a side-effect. Still feeling pretty rough but not bummed out. If this stuff works I guess it will be worth it, the alternative is not real pretty.
Toot I noticed in your profile you play on Door county I can see Door county out my front window across Greenbay only on a really clear day though. I think often its a refraction though. Been there many times and also Washington island, awesome area.
Have to get off this is really long winded for me as I can only finger type but thanks again everyone.
PEACE
Tortis

[toot2818]

Hi everyone, Thanks for the response yesterday toot. I was just to out of it to respond.
My legs are still very weak and I still have a very bad headache but less than yesterday and I pretty much always have a headache. My urinary problems are also still there but also a little better, I no longer have to hold on to something now its down to a manageable burning. I have developed pretty severe diarrhea overnight though could just be some of my ongoing Bowell problems but I do not remember that as a side-effect. Still feeling pretty rough but not bummed out. If this stuff works I guess it will be worth it, the alternative is not real pretty.
Toot I noticed in your profile you play on Door county I can see Door county out my front window across Greenbay only on a really clear day though. I think often its a refraction though. Been there many times and also Washington island, awesome area.
Have to get off this is really long winded for me as I can only finger type but thanks again everyone.
PEACE
Tortis

Glad day two was better. Sounds like you just have more than MS things going on. sorry about that.

Door County, we used to make that our summer vacation trip. Not last 2 years. Problem is there are not enough ADA places. Now that I need the walker/wheelchair and not just a cane it's much harder for me to get around. Restaurants don't have ADA bathrooms

I too am hoping the TY helps me improve my walking.

[tortis]

Glad day two was better. Sounds like you just have more than MS things going on. sorry about that.

Door County, we used to make that our summer vacation trip. Not last 2 years. Problem is there are not enough ADA places. Now that I need the walker/wheelchair and not just a cane it's much harder for me to get around. Restaurants don't have ADA bathrooms

I too am hoping the TY helps me improve my walking.

Hi, I did not want to put negatives on the Door county thing as I also can no longer go there or in a boat anymore due to mainly the balance and dizziness issues. I hate what the MonSter has done to us but I refuse to give up. I am still pretty much the same as yesterday, hope things get better soon.
Smile! It makes people wonder what you have been up to. PEACE
Tortis

[toot2818]

Hi, I did not want to put negatives on the Door county thing as I also can no longer go there or in a boat anymore due to mainly the balance and dizziness issues. I hate what the MonSter has done to us but I refuse to give up. I am still pretty much the same as yesterday, hope things get better soon.
Smile! It makes people wonder what you have been up to. PEACE
Tortis

Thanks, you didn't put negatives out there. I can still go sailing in Milwaukee -Lake Michigan. Our friend has a boat and he's very helpful. He brings the boat right to the gas dock and then helps me climb on. I love it.

Good luck with the TY, I have my next infusion August 3rd.

[frosty123]

round one, done

Hey frosty123,
you might want to note my suggestions to shel67 re hydrating etc..
I hope you have a great experience with your 1st infusion and Tysabri in general
Yes, please keep us posted !

1st infusion went well, took all the advise kindly offered here and hydrated. I was fine Thursday evening and and good Friday morning, then hit a wall at about 11AM and slept until 5. Pretty much normal now besides being very thirsty, not much appetite (good thing) and a bit more sluggish. Thank you for your good thoughts.

[tortis]

new two

1st infusion went well, took all the advise kindly offered here and hydrated. I was fine Thursday evening and and good Friday morning, then hit a wall at about 11AM and slept until 5. Pretty much normal now besides being very thirsty, not much appetite (good thing) and a bit more sluggish. Thank you for your good thoughts.

Glad to hear everything went well for you. I still have some side effects but getting a little better.
Some how your post got put on my thread but you are more than welcome aboard. I had to use the submit quote button to send this to you I could not get the regular submit button to work.
PEACE

Tortis

[lindaincolorado]

1st infusion went well, took all the advise kindly offered here and hydrated. I was fine Thursday evening and and good Friday morning, then hit a wall at about 11AM and slept until 5. Pretty much normal now besides being very thirsty, not much appetite (good thing) and a bit more sluggish. Thank you for your good thoughts.

Glad you are doing mostly well I hope each infusion gets better for you and tortis !

[tortis]

2nd Infusion

Hi, Everyone, well I had my 2nd infusion yesterday and unfortunately have almost all the same side effects as the first one. Really bad headache, very rubbery weak legs, very dizzy and burning urinary problems again. Once again though I will go for the third as there is nothing left out there that works or That I can tolerate. Need to go,screen not helping the headache any.
PEACE

Tortis

[lindaincolorado]

Doggone it Tortis,
I was so hoping the next infusion would've been easier/better.
It does take 4-6 infusions to see any improvement but, I hoped getting the infusion would get better NOW
Take care

[tortis]

2nd. day

Little better today it seems like its following the same course as the ist. infusion. All I can do is ah nothing Thanks for the response Linda.
I am really concerned that there has been nothing from Toot2818 she was not doing well and she said she would let us know. Have you heard anything? I do not see any posts from her. I sure hope she is OK .
PEACE
Tortis

[tortis]

Update 3rd Infusion

Hi everyone the 3rd infusion is over and it did not go well. I was so hoping for a easier one. I have or had almost all the same problems as the other 2 plus some new ones.
I was soooo nauseated all day and night and whats weird is it started with a really bad taste in my mouth that would not go away and it still is not totally gone.
Stomach is really screwed up again and I kinda feel like I have the flu. Super bad headache and dizzines again and all my joints really hurt.
I am starting to think I am not going to be my able to tolerate TY yet my neurologist feels its the only one that will slow the progression. I guess until I get a new M.R.I. I will not know and I do not know if only 3 infusions is enough for my Dr. to tell.
Got to go literally, I have been in the bathroom more than anywhere else the last 18 hours.Really bummed out and really no good options. Sorry about being a downer.
PEACE

Tortis

[pennstater]

Hi Tortis,

Hope things are a little better. Did your neuro have any suggestions as to what can help with side effects you are experiencing right after the infusion? Does it get better after a few days still?

I have no advice, as I have been fortunate with Tysabri side effects. As long as I am hydrated and eat healthy before and after it, usually OK. If not hydrated, I get the headache and if I eat fatty or sugary foods for a few days after, I get nauseous. Other than that, I am sleep the next day.

How are things now? Are you going for #4?

[tortis]

Bad Side effect

Hi pennstater, thanks for the response. Still have nausea problems and a real sharp deep pain in my right upper chest. My Dr. and Ty have been no help at all so far. I have had digestive problems for a long time but it has never been this bad. I will spare you the gory details, I will be seeing my neurologist on Friday I think I will probably have to stop Ty. I can not go on like this, also my insurance refused the first payment and its held up in red tape so it looks like I am going to loose my grant also. My stress levels have been at a all high which is not helping. I am just at the point where I am just real tired of all of it. Sorry about the negative post but it was good to just tell someone that understands the MonSter.
PEACE
Tortis