Myobloc


Posted by Randy in LA ® , Nov 15,2001,18:33   Archive
I am getting ready to participate in a long-term USC medical study on the ability of the body to create antibodies against Myobloc. Since I don't currently have health insurance due to the economy, I figure that this would be a good deal since it will allow me to receive free treatment for 4-5 years. I do know that it has recently gained FDA approval, but I am concerned about long term complications from the medicine and health insurance coverage after the study when I regain some form of insurance. Can anybody enlighten me on the myobloc and the possibility of insurance companies disqualifying me for coverage for participating in a study, or because of "preexisting health problems" as they call it. Thanks in advance.

Randy




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Re: Myobloc

Re : Myobloc --- Randy in LA
Posted by Renee Urban ® , Nov 16,2001,21:38 Top of Thread Archive
When has the Myobloc gained FDA approval? Someone on this board told me that it hadn't been approved yet. I would be interested as my neurologist gave me a Myobloc shot rather than a botox shot on my last trip there.(I am in the beginning stages of a Myobloc shot right now.)



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Re: Myobloc

Re : Re: Myobloc --- Renee Urban
Posted by Anne Brett ® , Nov 18,2001,10:34 Top of Thread Archive
Myobloc was approved by the FDA for use in the treatment of spasmodic torticollis (ST)as of the end of last year, first part of this year. It hasn't been approved for any other treatments as yet but testing/trials are on-going at the moment for its use in the treatment of other dystonias.

On the insurance Randy. That's a tough one. I had my original health insurance company go belly up and when I applied for new coverage they wouldn't cover anything to do with spasmodic dysphonia since they did consider it to be a pre-existing condition.

Anne




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Re: Myobloc

Re : Re: Myobloc --- Renee Urban
Posted by Jill Muller ® , Nov 19,2001,10:38 Top of Thread Archive
Renee,

You received a Myobloc injection recently?? How is it going? Does it feel like the Botox, other than the swallowing?

I just lost my insurance coverage and was asked by my doctor's office if I wanted to participate in a Myobloc study, as the cost would be much less. I don't know much about it. I've been receiving Botox for the past 1 1/2 years.

I need to do something soon-I have to job interview! I cancelled my appt several weeks ago when my insurance cancelled, but now I think I'm just going to have to pay OOP as my new insurance will not cover injections.

Jill




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Re: Myobloc

Re : Re: Myobloc --- Jill Muller
Posted by Renee Urban ® , Nov 20,2001,18:16 Top of Thread Archive
Yes--the Myobloc feels very much like botox. I actually like it better because there are not the swallowing problems. It has been almost two weeks and I am still breathy. My boyfriend claims that it is slowly getting louder. He, also, remembers the botox at the height and I had almost a perfectly normal voice. I have good expectations for the myobloc shot. So far--so good.



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Re: Myobloc

Re : Re: Myobloc --- Renee Urban
Posted by Jill Muller ® , Nov 21,2001,08:29 Top of Thread Archive
Renee,

Are you participating in a myobloc study? Did you pay full-rate? Had you been developing antibodies to the Botox or was there another reason you decided on myobloc?

Thanks!

Jill




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Re: Myobloc

Re : Re: Myobloc --- Jill Muller
Posted by Renee Urban ® , Nov 26,2001,13:18 Top of Thread Archive
Jill,
I'm not participating in a myobloc study. Also--my insurance covered it, like the botox shot. I decided to try the myobloc because my neurologist speaks very highly of it. So far--my voice is starting to come back like with the botox. So far--I actually like it better because there are not the swallowing problems like those associated with the botox. I'll keep the board posted on my progress with this shot.


Renee




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