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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Quote:
Originally Posted by Natalie8
Hi Keri,
I'm sorry I freaked you out too with those articles!!  I don't know why I went back to look at my MRI reports or why I was researching MS stuff again. Probably because I started panicking about what might happen if I can't tolerate the copaxone. It's making me feel kind of flu-like. Then what is next?? Interferons are out because of a history of depression (2 weeks of Rebif and I started getting massively depressed not to mention sick as a dog). Tysabri scares me. How are you doing on that? Did your first infusion go okay? I followed some of your threads and was glad to hear you finally got on it.
Yes, the whole "at some point we stop counting" REALLY scares you, doesn't it? Yeah, every time I see the word "multiple sclerosis" I get frozen too. They are such two ugly words. Why couldn't it have a better sounding name? Like C.B. for cotton balls? Or PBP for Pretty Brain Pattern?
I am also sorry you are feeling physically crappy too. I was going to say s**tty but they blocked out my previous use of (another word for donkey) so I figured that one wouldn't be okay either.
The first neurologist I saw who had to admit me into the hospital because my internist couldn't (and it was Friday and he was the only guy on call) was terrible. I dumped him right away. BUT...he did give one good piece of advice. He said not to go online and google about other people's experiences because everyone has a different course--no two cases are really alike--and there is no point in trying to scare yourself or compare. My MS therapist told me that it's no use looking at statistics either because they don't account for individual experiences. She believes in what she calls the "X factor" -- the unknown possibility of doing well or not becoming one of the "terrible" statistics.
Anyhow, I hope I wasn't the cause of too much of your anxiety!! 
Natalie |
I want PBP - Pretty Brain Pattern. I say that we start a campaign on that immediately....with all our spare energy. LOL 
No, you didn't create more anxiety in me...I was having it already. I'm researching alternatives in case Ty doesn't work for me (but it will!!) - b/c I think knowing the information helps me when I have a panic-relapse!  This way when I begin to think "What if the Ty doesn't work" - then I can answer myself with, "Okay, I will do XXYYYYZZZ then."
My first Tysabri infusion was great - no complaints...was very easy (uh, yeah, I mean the infusion part - not the "getting to the infusion" part...but I think you read about that part!). I had some major fatigue afterwards and just felt like crud for a few days... but no other side effects directly related to the Tysabri (just the MS).
I'm not frightened of the Tysabri...the MS scares me more...so it was more than worth it to me to get on it. I agree that we can't rely on other people's disease experience...b/c we are all different...but it seems that with Ty, if it works for you, it REALLY works for you...and if it doesn't work, then it doesn't! The possible benefits of Ty far outweighed the risk. I think the problems with Ty have been over-sensationalized....but to be honest, I'd rather know of the possibilities....I just didn't let them scare me. Besides, the interferons scare me way more than the Ty. I go for my 2nd infusion at on May 2. I'm all prepared: ativan in one hand, benadryl in the other. Oh, and I guess I need some extra hands to carry my blankey!
BTW, I like small dogs...I just got a yorkie puppy for Xmas (sadly, she now lives with my best friend and her toddler....b/c I couldn't take care of her).
~Keri
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