Multiple Sclerosis (MS) Support Group
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As a result of the most recent MRI done on my brain...I was referred to a treatment center for Tysabri (sp?). I agreed that was probably the best option for me right now.
Well, I'm glad my so called neurologist even bothered to tell me that I wasn't just GOING for treatment, but I was going to be a NEW patient.
Which, to me, isn't that big of a deal, considering this doctor specializes in MS itself, not just neurology?? Anyway, he has MS himself and there's this whole center that is supposedly huge, with exercise machines to help strengthen weak areas of the body, made for those with MS I assumeI'm just really irritated that the office could not bother telling me I was going to be his patient from now on.
Why couldn't they have just said that? Look, this is out of our hands, we need to send you to somebody for a second opinion, we don't want to fuck up.
I get that...and I was never told ANYTHING.
Kinda feel kicked to the curb in a way.
"Oh, her illness is progressing much too fast for us..we must send her along and inform her of NOTHING"
It's quite a stretch, I know, but that is how I feel.
Knowing the possible outcomes and side effects, I've heard a lot of good things about Tysabri. I hope to learn more about it from this new Neuro and for once I am actually positive things will work out and I will be ok.
Well, I'm glad my so called neurologist even bothered to tell me that I wasn't just GOING for treatment, but I was going to be a NEW patient.
Which, to me, isn't that big of a deal, considering this doctor specializes in MS itself, not just neurology?? Anyway, he has MS himself and there's this whole center that is supposedly huge, with exercise machines to help strengthen weak areas of the body, made for those with MS I assumeI'm just really irritated that the office could not bother telling me I was going to be his patient from now on.
Why couldn't they have just said that? Look, this is out of our hands, we need to send you to somebody for a second opinion, we don't want to fuck up.
I get that...and I was never told ANYTHING.
Kinda feel kicked to the curb in a way.
"Oh, her illness is progressing much too fast for us..we must send her along and inform her of NOTHING"
It's quite a stretch, I know, but that is how I feel.
Knowing the possible outcomes and side effects, I've heard a lot of good things about Tysabri. I hope to learn more about it from this new Neuro and for once I am actually positive things will work out and I will be ok.
I'm glad you're feeling better about the new neuro. You must be completely comfortable with your care and treatments.
There is a Tysabri sub-group here at DS. Go to the top right hand side of your screen and double click on groups, and search for the Tysabri sub-group. You will get a lot of info. Don't forget to "view all" so that you can see all posts to the group, not just the first page of posts.
I'm inclined to say I'm sorry that happened. On the other hand it might be a blessing, some people struggle for a referral to a MS Center. Read everything before signing anything. Also they need to check for a virus,,I think JC ,,,where Lynne recommended is all the info.
Keep us posted, Alma
It's not that, I'm just not happy I was not told the whole story :( Im sitting there like, wow, I was your patient for 3 years and you can't tell me anything?? I hadto hear it from someone else? Ugh I dunno. I need to stop stressing.
I know the risks involved with Tysabri, for the most part, I know they have to see where my T cells are at to see if my immune system can handle it.
I've never been one to say no to more info though.
I was given the option of Rebif first, but I chose Tysabri, and my neuro agreed that that is probably the best option, considering how much it has progressed.
I'm kinda all over the place right now, but I will look up that subgroup and thank you both :)