Symposium/Botox Immunity
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Posted by: Ida Neary ®

02/08/2003, 14:36:37

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Is there anyone on the board who has also become immune to Botox A and Myobloc and is going to the symposium? If so, could you find out if anything is being done or even if it is being looked into and let me know?

Thank you

Ida AD/SD 25yrs. Iowa






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Re: Symposium/Botox Immunity
Re: Symposium/Botox Immunity -- Ida Neary Top of Thread Archive
Posted by: Lynne Martinez ®

02/08/2003, 16:01:38

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Ida,

This response to your post might be "overkill" (*TMI* - "too much information" - LOL) and, if so, I apologize. But, bear with me, so that people who haven't been to symposiums understand how they are run and whether a question like this, or a question on any topic, would be specifically addressed.

The symposiums have a *format* with medical professionals presenting briefly on various topics ("the latest/newest/greatest," per the agenda) and then gathering in a *presentor-panel* on the same subject. Questions are submitted to the panel, from the attendees, on 3x5 cards.

It's been my experience over the past five years that the symposiums have gotten larger and more professionally-run and the participants (us patients) have gotten smarter; and, thus, the questions submitted to the panel get more robust, more informative and their volume increases. Loads of great questions, with not enough time to answer them all.

Bottom-line: The best opportunities to get to the doctors are during the Q&A panel session (but not all questions can be answered, as I've asked some in the past which they didn't get to) or, if you get lucky enough to grab them on a coffee-break.

Impressions from past symposiums on the "immunity" topic: I can't quote what any professional has said on this topic, as I don't remember the exact wording. It's just been part of a general discussion. However, the sense I get when the subject of "immunity" comes up at a symposium is that it is extremely rare for an SD patient (as opposed to a cervical dystonia patient) to become immune to Botox/Myobloc, due to the low doseage. SD patients generally get only 1 (one) percent of the dosage a cervical dystonia patient would get, with the same frequency. The general procedure ~ if shots aren't working ~ is to try different doctors, with different techniques AND (if nothing is working), to try the "eyebrow" test.

That test was discussed at the Arizona Symposium. It's where you are injected on one side of your face, right above an eyebrow, and the difference in facial reactions is observed. If there is a difference, then "application" (doctors, techniques, doseage, injection site, etc.), rather than "immunity," may be the issue. Have you had that test? Most doctors would want you to try other variables first.

Hope this helps. Our cases are all so different, so this question (like so many) would be answered based on an individual case. The best option is always for people to come to symposiums themselves to work their own questions, but I know the traveling can be difficult.

Best wishes,

--Lynne (AD/SD; Northern California)







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Re: Symposium/Botox Immunity
Re: Re: Symposium/Botox Immunity -- Lynne Martinez Top of Thread Archive
Posted by: Ida Neary ®

02/08/2003, 16:51:11

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Yes, I had Botox injected into my forehead with no response.

After I posted this message I sent a message directly to Dr. Ludlow and recieved an answer within a couple of hours. Dr. Ludlow said that all doctors would be asked about this and that this problem was of great interest.

Thanks for the TMI anyway. lol

Ida






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