However the tremor/spasm's are still not gone. I've been reading that the effects can take up to a week to fully show themselves? And average at least 2-3 days before real improvement is seen? Is this typical for those of you with experience in this? Seems like a directly injected neuro-toxin should become fully active much more quickly than that!

Thanks!

http://www.dystonia-bb.org/forums/asd/posts/11007.html

If you had posted here first I would have answered you here.

If you read through a selection of posts on this BB you'll will see that many of us have had Botox shots for SD, so your assumption is incorrect.

Best wishes

Yes I've NOT read every previous post here, and have likely even been redundant.

I've just had these shots, they were and are scary.

I'm upset about it and therefore perhaps not the clear epitomy of rationality that you clearly were when you went through it the first time yourself.

My diagnosis was last January; before having my first treatment, I took 2 months to learn more about SD (mine is ABductor) both through electronic & print sources and connections to others with SD in my area. In addition, I work with a wonderful speech path. who gave me lots of resources and great anatomy lessons. By the time I got my first shot, I had already been to a support group meeting and a patient symposium (the one in Scottsdale last March), and had a 2" binder filled with what I had learned and collected. For me, that research period gave me lots of reassurance -- including being comfortable with the clear reality that there is no ONE response to the Botox, as there is no single pattern to the way SD manifests itself. And I was very clear that I am in charge of my own treatment.

My first injection (7.5 units, right side) was a bust; I had one day of a normal voice 3 weeks after the shot. Other than that, I'd say I was mostly worse than pre-shot. Three months later I had a second shot (2.5 units, left side) with dramatically different results. My dr. shared the video of my vocal folds from the diagnosis point and before the second shot; it showed (well enough for my untrained eyes to see) that there was still residual effect from the first shot, so it wasn't the case that it didn't "take." Rather, it wasn't enough (apparently), given which muscles are having the spasms in my case. My guess is that the second dose gave the right balance. Now, two months later, I am still better off than I have been at any time in more than a year (my SD onset began about a year and a half ago), though I do have some spasms. But I am not as exhausted from all the air I leaked due to the AB spasms, and people can hear me more easily. I use my fanny pack mic/amplifier when I have to talk in a large-ish space (more than just a few people around a table) because I still have no volume to speak of. But I feel, overall, thrilled that Botox apparently is going to be a huge help to me in keeping me functional.