neuro is backing out of injecting Myoblock


Posted by john de , Feb 27,2001,13:57   Archive
hi gang dont post much here but come here often...saw neuro on dec 27th...since i'm immune to botox A(after 15yrs) wz excited when Myobock wz aprovved...well he said he would inject my spastic R arm my eye musclesand my neck(i have really BAD torticollus pain s devastin)..well his nurse called me saaid he would not inject my eye muscles...really disappointed.will go thru w injections in my neck and beg him to do my eyes...mayb a $5 bribe? grin....could b a liablity thing i dont know ...had BEB since 1984 and ST since 89.will let u know what happens.all of this from encephalitis in 1973 hugs john



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Re: neuro is backing out of injecting Myoblock

Re : neuro is backing out of injecting Myoblock --- john de
Posted by Sally - in - Idaho , Feb 27,2001,14:13 Top of Thread Archive
Hi John,

I correspond with a man in Pennsylvania who lives with tremedous pain from his dystonia. He has eagerly awaited Myobloc as he is immune to Botox. He goes to a neuro at one of the big university hospitals, but has been getting the stall treatment as far as having his injections. He is beginning to wonder if there is a problem with the Myobloc. He has heard from two people who did not have good results from it. Makes one wonder.

Sally in Idaho




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Re: neuro is backing out of injecting Myoblock

Re : Re: neuro is backing out of injecting Myoblock --- Sally - in - Idaho
Posted by colleen , Feb 27,2001,14:33 Top of Thread Archive
Hi John
I got my Myoblock injections Feb.2 so far so good. No more side effects than with Botox A The pain is more with the myoblock,but it doesnot last very long My eyes really feel good.With the a they only last 3 weeks.They may not work as well with someone else.So far i am very happy with it.
Good Luck Colleen IL

--modified by colleen at Tue, Feb 27, 2001, 14:35:23




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Re: neuro is backing out of injecting Myoblock

Re : neuro is backing out of injecting Myoblock --- john de
Posted by Shirley-Arkansas-USA , Feb 27,2001,14:42 Top of Thread Archive
Hi John,
I could be wrong but my understanding is that Myobloc has not been "approved" yet for Blepharospasm. At least, I think I remember someone mentioning that recently. I think that they said that it had been approved for cervical dystonia (ST). Anybody else out there know for sure. If it hasn't been approved yet, your insurance would not pay for it under the circumstances. You might call your doctor's office back and ask them if that is the reason.

Shirley in AR.




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Re: to Shirly

Re : Re: neuro is backing out of injecting Myoblock --- Shirley-Arkansas-USA
Posted by john de , Feb 27,2001,15:04 Top of Thread Archive
Shirly BINGO myoblock s only approved for ST....know my medicare would not pay for my eye injections.wow imust b brain dead .thanks ..stilll would like to try it for BEB but once agin its about $$$$ .thanks again will stay n touch hugs john



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Re: to Shirly

Re : Re: to Shirly --- john de
Posted by colleen , Feb 27,2001,18:26 Top of Thread Archive
I know that Myobloc has not been approved,but Dr.Racette said his office checked & said that madicare would pay for them.Hope he is right if they don,t i will be in trouble. Should know in a few days.

Good Luck Tomorrow Shirley

Colleen



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Re: to Shirly

Re : Re: to Shirly --- colleen
Posted by Shirley-Arkansas-USA , Feb 27,2001,18:52 Top of Thread Archive
Thanks Colleen. I dread the 7 hour trip up there but I sure do like Dr. Perlmutter. I'm sure that Dr.Racette is very good, too.
I hope that you are right. If not, since they called and checked on it and his office said that Medicare would pay for it, if they don't, Dr. Racette's office may just not bill you for it. I really don't think that it has been approved for BEB, yet, though. Did you get it for your neck, also, or just your eyes? I believe that you said that you had some cervical dsytonia also. If so, they may just bill it that way to get around it. Probably not, though.

Shirley in AR.




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Re: to Shirly

Re : Re: to Shirly --- Shirley-Arkansas-USA
Posted by colleen , Feb 27,2001,19:03 Top of Thread Archive
Shirley. Dr Racette said that it had not been approvd for beb.


Colleen




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Re: to Shirly

Re : Re: to Shirly --- colleen
Posted by Sally - in - Idaho , Feb 27,2001,21:08 Top of Thread Archive
I wonder why my neuro said it HAD been approved. He wanted to give Myobloc to me at my February 7 treatment, but I said I wanted to stay with Botox as it is working quite well. The doctor was anxious to try it on some of his patients. He told me he had used it on one person now and thought it was going to be effective ... that person had no results from Botox. My ONLY affliction is blepharospasm, so if Myobloc has not been approved for BEB, then Medicare and my HMO would not have paid. So I wonder what is actually going on.

Sally in North Idaho wishing Shirley a safe, comfortable trip and great results from this Botox session




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Re: to Shirly

Re : Re: to Shirly --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Feb 27,2001,21:23 Top of Thread Archive
Thanks Sally, I've got my sandwiches made and my snacks packed. Plenty of Dr.Pepper and orange juice. No tofu, anything. No sugar-free anything. I still have to pack my CDs so that I have something to hum to.
Someone posted a link to the Myobloc website (June maybe?). You could look that up and send them an email and ask about what it has been approved for and if Medicare or other insurances will cover it for BEB. The doctors may not be aware of this either. I think that they are wanting to try it and see how well it is going to work. They don't even know what dosages to use, yet. I guess that is the same with botox and it is just trial and error. We'll probably be having some people with good results and some with not so good. Same as with botox. I personally don't like the thought of it being a thicker solution and a larger quantity needing to be given. Thicker solution usually means a larger gauge needle has to be used or you can't inject it. More solution means more discomfort(Nicely put) at the injection site. I'd afraid I would have to pull Shanasy's drug regimen and take 3 Ativan.
VIrginia needs to research this for us. OHHHHH VIrginiaaaaa.
She just hates it when I do that.

Shirley in AR. You guys be good while I'm gone.




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Re: to Shirly

Re : Re: to Shirly --- Shirley-Arkansas-USA
Posted by Dan McNellis , Feb 28,2001,11:57 Top of Thread Archive
Myobloc is only approved for cervical dystonia. But Botox was not approved for cervical dystonia until Dec of 2000. It was initially approved for blepharospasm and yet many doctors have used botox for "off label" uses for years now. This is not at all uncommon. I visited the FDA's web site where they have a section that shows what drugs have been approved,for what purposes and when. It is on the basis of a precedent having been set for off label use of botox by my insurance company that I am fighting my insurance company to give me myobloc injections. They gave me botox for cervical dystonia 10 years ago. I also contacted the myobloc people at 1-888-GO1-call and they are going to have an advocate make an appeal to my insurance company on my behalf. I suggest that anyone else having this problem should make the same phone call.

Dan




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