Well...talk about two neurologists, three opinions!
First off, he doesn't think I'm suitable for disease modifiers, as I'm not having "typical" relapses (trust me to be awkward, eh?) He thinks there's a possibility I might be helped by Mitoxantrone (Novantrone) - the drug you'll hear some people referring to as "chemo". It's a cancer chemotherapy drug which you get through a drip once every month or every three months.
The idea is that it calms down the immune system and stops further damage to the myelin. It does have risks though, including potential heart problems. He didn't sound that wild about my suitability for it, but he suggested I went off and read up about it, then came back in four months and saw him again.
In the meantime he's going to get some extra information from my existing neuro...because guess what...he's not convinced I even have MS!
*hits head against wall
4 comments:
Hit their heads against a brick wall, not your own-saves you the pain!!
Someone on livejournal told me that in the US it is illegal to undiagnose someone with MS. Odd legality, but it might stop people (doctors) wanting to turn us all inside out and upside down THEMSELVES, because they don't trust their esteemed colleagues.
how can it be illegal to undiagnose MS? If the diagnosis is wrong it's wrong
My neuro suggested trying the mitoxantrone when he told me I was now spms (although I knew that myself) and I said I no longer wanted to continue on the rebif as I didn't think it was doing me any favours. After reading about the mitox. I gave him my answer, a great big NO NO NO WAY!!!!!!!! I know it has worked for some (and I also know others that it hasn't worked for) and I am not ready to be myself at risk for something that MIGHT work!!!
candycane: I have no idea.
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