I'm not sure of the official distinction between "official study" and "small scale experiment," but I think it was "official." At any rate, I believe it was funded in part by Biogen (Avonex). I don't know if it was part of a larger study with other centers or if it was just at the clinic I visit. I do know I was #13 in the study and at the time I enrolled they had had no relapses among the other 12 enrolled. How's that for anecdotal information!
I still have a three month supply in my kitchen cabinet....(no one asked for it back when I dropped out of the study). I suppose I could just take it for awhile, and in fact I did for a week in July. It makes me a little woozy, but I believe that would go away if I took it long enough (back in January I assumed the wooziness from from the avonex, but I experienced it again in July). However, I am NOT taking it because I am hoping to get pregnant soon. So, that settles that for awhile. But I would definitely consider lobbying for it again down the road. We'll see...my current treatment plan is to stay pregnant and breast-feeding until they find a cure. Well, seriously, I do feel hopeful that if I do get pregnant, by the time I wean there will be some more options out there. We'll see...
P.S. Just to clarify, I wanted to be pregnant again BEFORE I was diagnosed with MS and am actually just grateful that I feel well enough to consider it again!
I am a newbie here - and I am writing for my partner, because he is not fluent in English (me neither ).
My partner has very recently got the diagnosis : primary progressive ms.
So I am reading and trying to learn as much as possible about this.
I find minocycline very promising - I am not a doc, but a chemist and the option "ms is not an auto-immune disease" might not be true, but certainly it is worth to explore that idea.
Now our problem is, since it is ppms, my partner does not get any treatment at all. We would be willing to try minocycline - since it seems to be safe - but, no doc wants to prescribe it. Can anybody help? We are living in Belgium. Thanks in advance.
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- Location: Bedfordshire UK
Take care, everyone,
I just wanted to throw in my support for what Finn and Sarah just said.
And although I know the NMSS isn't on everyone's "best friends" list, I just have to say that they told me the same as what Finn just recommended about finding a "cooperative" neuro. The NMSS referred to it, though, as "engaging" the researchers/doctors in the field, and supported our continued efforts in "sharing" our ideas, etc. (And of course, although I know it may not be a popular viewpoint with all, I am very supportive of the NMSS, but do respect others' differing opinions.)
For some reason I just found that interesting.............
Best of everything, bruintje. We all know what a "hard row to hoe" this all can be. But we're all here to help in any way we can! (Man, I'm full of quips and quotes today, too, huh?)
Ok, not for me, but for my partner - he is taking it for about a couple of days - he is getting worse - only a little bit.
Sure I will keep you informed!!!