newer injections like botox but not....


Posted by Teresa Beaver , Dec 06,2001,21:11   Archive
I haven't posted in awhile but wanted to see if I could get some information from some of you experienced with the botox injections.
My neuro referred me to his associate the one that gives botox injections. He said I had bleph which my neuro suspected. He wants to start me on injection like botox. Apparently there new and he said he has a new round of patients just starting on them. I don't remember what he called it some sort of block. Is anyone familiar with this? If so I'd love to hear from you and what your reaction was from it, if any. Im very nervous about it since I've read on the boards of so many different reactions for each person. He also said I most likely have Dystonia as well but didn't go into it. I have other problems with my
legs, arm, neck, and tongue. Too many to go into. I'm very fortunate in the fact that it affects one eye more than the other. My right eye just closes and the left blinks. If i get involved in doing something and don't think about I usually don't have problems. Light bothers me though. Does anyone have problems with eating certain sour things. If i eat say a bannna that isn't really ripe, it can cause my eyes to close. It only last for a few seconds, but it sure crawls from the back of my neck over my head to my face, wierd huh. Usually chewing or yawning will release the spasms for a few minutes. Just curious....
Anyway if any of you know about this new drug please let me know what to expect with it.
Thank you,
Teresa
Bleph



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Re: newer injections like botox but not....

Re : newer injections like botox but not.... --- Teresa Beaver
Posted by Virginia , Dec 06,2001,22:11 Top of Thread Archive
My guess would be Myobloc. It is made from botulinum neurotoxin B, whereas Botox is made from botulinum neurotoxin A. This is the best link I could find, since the Elan www.myobloc.com site is temporarily down while they are updating it. This link is to a .pdf file and you will have to have Adobe Acrobat to read it. Related link: http://www.wemove.org/pdf/Myoblocpi.pdf



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Re: newer injections like botox but not....

Re : newer injections like botox but not.... --- Teresa Beaver
Posted by Dee in OR , Dec 08,2001,17:30 Top of Thread Archive
Hi Teresa,

I suspect you are referring to myobloc also. At the BEB conference, they said thay myobloc was used primarily for torticollis and not very helpful for blephs. I would research it first before getting the shots. Good luck.

Dee in OR




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Re: newer injections & face aysmetry different..

Re : Re: newer injections like botox but not.... --- Dee in OR
Posted by teresa beaver (Teresa Beaver,teresa beaver), Dec 08,2001,22:21 Top of Thread Archive
Hi Dee,
Thanks for the information. Someone else left me a link to go to for more information but i was unable to connect to that link. It was at We Move. Is myobloc the name of the medication? I would most definatley like to research it more in depth. Of course its possible they know more than there telling me which isn't much. I also wanted to ask another question do you know of anyone else whose face shape meaning the asymetery has changed. My left side had become much larger than my left and droops more too. Just wanted to know since the Dr. mentioned it, but everyone in my family says that it hasn't always been that way and i started looking at pictures and I don't see it then either. Interesting i thought.
Thanks for your help. Dee I also wanted to know if you were the person that went and had lunch with Suzie? Im trying to reach her and haven't heard anything from her. You may not be the person but i thought it was you, i apologize if not.
Thanks soooo much
Teresa



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Re: newer injections & face aysmetry different..

Re : Re: newer injections & face aysmetry different.. --- teresa beaver
Posted by Dee in OR , Dec 09,2001,00:42 Top of Thread Archive
Yep, I'm that Dee. I'll tell Suzie you are looking for her. We talk on the phone often. No, I've never heard of anyone's face symetry changing.

Found this in my files. Thought it might help.

Elan is providing a comprehensive customer support program, GO-1-CALL,
designed to provide timely and accurate services to patients and their
physicians. Patients and physicians may call one number, 1-888-GO-1-CALL,
for any information regarding MYOBLOC Ready-to-Use Solution, including
answers to questions, reimbursement assistance, and patient education
materials.

Dee in OR

--modified by Dee in OR at Sun, Dec 09, 2001, 00:44:44




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Re: newer injections like botox but not....

Re : newer injections like botox but not.... --- Teresa Beaver
Posted by Shirley-Arkansas-USA , Dec 09,2001,21:25 Top of Thread Archive
Hi Teresa,
Myobloc hasn't been approved yet for Blepharospasm-only for Cervical dystonia although some doctors are trying it on their BEB patients. Some of the people on this board have tried it but I believe they have since gone back to Botox.
They don't have the dosages worked out yet for Myobloc for BEB so it is a matter of guesswork for the doctors. My movement disorder specialist said that it wasn't any better than botox just a different treatment option. He said that his patients that he had tried it on and what he had heard from others was that it was also more painful for the patient. I believe that Elan (that produces Myobloc) is working on adding something to it to make it less painful.
It also has a higher protein content than Botox which means if anybody is worried about antibody formation, it will be more likely to happen with Myobloc than Botox which has a very low protein load (the protein is what you develop the antibodies to.)

Personally, I would stick to the Botox until they get the kinks worked out and the dosages figured out for the Myobloc instead of them experimenting on me, unless the botox wasn't working for me. Then I would give it a try.

Shirley in Arkansas




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