Did you really mean "30" cc.s? My doc started me out on 1 cc each unit (he's fellowship trained at Johns Hopkins). He finally went up over the past few months to 3 cc.s in each chord on Wed. Today I am happily breathy and losing my old voice. I was just curious why you were getting such a huge dosage, or maybe I've misunderstood units vs. cc.s.?

I'm confused. I've met people who get 10 units in each cord (20% of a 100 unit vial) and I've met people who only get only .3 units (point-three)in each cord (way, way less) and everything in between - bilaterally as well as unilaterally. But, 30 units in each cord??? Are you kidding? I've never heard of anything so high. Have you gotten a second opinion or tried another doc or is there a reason for the doseage being so high? Are you sure the doc is hitting the right muscle? Botox is not usually so inefficient as to need 60 units into the tiny vocal muscles (or is it?...am I missing something?)

Good luck. This takes my breath away. Sounds more like the doseage for cervical dystonia (ST - into those big neck muscles)?

That's all I can say. Since I never had Botox myself (as my doctor insisted on surgery based on my severe case), I can't relate to that doseage from a personal basis. But, I can't remember any SD Botox doseages on this Bulletin Board in the past years that took such a high dose. Who knows, maybe some of them should have (?); and, maybe some did but didn't put their doseage out on the BB?

Sometimes I wish we (as patients who enjoy doing research to try to figure out our disorder) had a list of who is taking a certain doseage, in which cord and at which duration and from which doctor. I'm interested in all of this, having been an analyst in my past life. It's just my analytical personality.

Good luck, Larry, and keep us posted. I'm not concerned at all about the doseage into your body, having sat through some Botox treatments (driving my friends with Cervical Dystonia, who couldn't drive themselves due to their twisted neck, to their appointments).

Even though I've been to a couple of Myobloc seminars, I didn't think to ask Larry that question (you're so brilliant!). I just figure when people say *Botox,* they mean botulinum-Type A and *Myobloc* is botulinum-Type B. Not the same product or the same pharmaceutical company.

The *mouse units* in medical testing of the botulinum products (a laboratory-term re how much it takes to have an effect), are different for each. Myobloc is still in the *Test Phase* as far as how much, in a Botox injection, corresponds to a Myobloc injection for SD patients. The doctors who inject Cervical Dystonia patients have a better handle on it as the official ("on-label" - which means FDA approval) Myobloc testing for dystonia was done with Cervical Dystonia patients.

Thanks Anne. This intrigues me! Since Myobloc is so new for SD patients, I guess we'll have to go through this Botox/Myobloc translation for some time, ensuring we're not dealing with apples and oranges.

So it's very, very important not to generalise on the injected product - whether it be Botox, Myobloc or Dysport - all being used around the world with completely different unit measurement levels.

Funny. Great fruit salad. Larry is in New Orleans so he's probably not on Dysport but this is an excellent point re being specific (fruit-salad-wise), rather than general, in our references. It reminds me that (all these years I've been on this BB) injectees haven't always been specific as to product, duration, unilateral v. bilateral, doseage, etc. I find the whole thing quite fascinating.

Thanks, Lynne

No I don't know of any one in North America being given Dysport. I don't think it's even available here. But the figure of about 10 units Dysport to 1 unit Botox somehow sticks in my mind.

Lloyd

See Anne's post and mine back to her. Can't wait to hear back from Larry, on this issue. And, also, I'm interested in hearing from Renee Urban of this BB (who is on Myobloc) to know how much she is getting in her injections. She sounded breathy but good in Arizona, on Myobloc.

Renee...respond please, re your doseage? Renee is the only SD-patient I know personally who is a Myobloc patient. Writing to Renee now in hopes she can shed some light on these doseages.

--Lynne