6th TY infusion and possible relapse...

[haha4484]

have not posted in quite some time...a lot has changed since the last time. I since started TY- MRI found lesion on brain stem. but i was scared to death to start TY but I am glad I did, so far it has been great- no side effects other than feeling a little tired the day of- but for the most part i have my energy back and feel like I have my life back.

Until about 2 weeks ago when I had my 6th TY. Ever since- I have felt terrible, cannot hardly walk, chills, shaking, hate to say it but some confusion, trouble swallowing and numbness/tingling in both legs and right arm and the wonderful feeling we all know too well- the hot and cold sensations...fatique, insomnia, and the worst pain in my hip and back i have ever expeirienced in my life. the confusion part scares for obvious reasons- but I am JC negative- so i try nt to think of that...my brain is foggy,like i am here but not here or almost lie i am watching myself- or like i have been out in the sun for too long.

I do not understand what happened. It literally started the day i had my infusion- but of course i hate feeling like a hypochondriac so i did not call my neuro until this past friday. i go tomorrow. Plus i am a work a holic who is terrified of loosing my job if they notice something is wrong- so i hide it. they do know of the MS and have been supportive thus far, i just hide any progression. it's terrible! just needed to vent for a min. if anyone may have experienced any thing similar..please respond! of course all i read online is PML...so i steer clear from that. thanks for allowing me to vent for a few...

[LL60]

Please let us know how your app. goes today.

No, I have never had anything like that happen except when I had a bad cold last year and had chills and fever and aches and pains, that went away with the cold.

I have had 3 times of the MS hug since the 2 1/2 years of being on Tysabri. Each time a little less severe than the last. A CT scan was done to rule out anything else going on.

Are you feeling any better?

[jersey-in-pa]

Oh my goodness That stinks.

I love this site tho, it serves a reminder that everyBODY is
different. Someone said, "if you've met 1 person w/ MS, thats it. You have met 1 person w/ MS."

Every picture tells a story, my picture is just a ? w/ a halo.

[haha4484]

Thanks so much for replying. I was beginning to think i was a loner...
No not feeling any better- I will be leaving in about half a hour to go to my neuro in Atlanta.I am also having problems swallowing, that has been going on since Friday evening. I did not think much of it until now it is so noticeable every time i take a drink or bite of food i almost choke. My tongue also seems it's about 3steps behind what I tell it to do.
I will try to post when I get back. Hopefully it's nothing obviously a relapse of some sort. MS Hug hurts like crazy, i always tell my neuro it's like a elephant has decided to give me a hug and won't let go.
Thanks again for responding.

[salamandertom]

I had my 3rd infusion last friday, smack in the middle of a flare. I have felt terrible since, with many of the symptoms you describe. I am having an MRI tomorrow, and my neuro said that if the MRI is stable we will have to consider what to do about me being on the tysarbi. I hope you had a good apointment and are feeling better. Please let us know.

[Tinkerbell65]

haha- just had my second and have not been feeling the best since, but I also think I might be fighting off a cold my daughter was sweet enough to bring home from school with her.

With Ty I don't think you can be accused of being a hypochondriac. Wouldn't you rather ask and be told you're fine than the other way around?

Please let us know how you're doing!

Theresa

[lindaincolorado]

haha4484

Thanks so much for replying. I was beginning to think i was a loner...
No not feeling any better- I will be leaving in about half a hour to go to my neuro in Atlanta.I am also having problems swallowing, that has been going on since Friday evening. I did not think much of it until now it is so noticeable every time i take a drink or bite of food i almost choke. My tongue also seems it's about 3steps behind what I tell it to do.
I will try to post when I get back. Hopefully it's nothing obviously a relapse of some sort. MS Hug hurts like crazy, i always tell my neuro it's like a elephant has decided to give me a hug and won't let go.
Thanks again for responding.

haha, please let us know how you are.
Linda