My questionnaire arrived today


Posted by Sally - in - Idaho , Jun 19,2001,19:44   Archive
Hi everyone ... My questionnaire from the BEBRF was in my mailbox today, so they are slowly trickling through the mail. Be patient if yours hasn't arrived yet, but with a June 30 deadline they do need to get to everyone soon.

Tomorrow is B-Day for me and I've been needing that poison for about three weeks now. I hate putting that stuff into my system, yet I keep going back. Do you suppose we are a bit like "illegal dope" addicts?

Today I talked with a friend who is in constant back pain and has to be bedfast much of the time. This has gone on for years. I mentioned Botox to her, and she said that is one of the options her doctor is considering before doing more surgery.

The Oregon newspaper article featuring Dee was not published Saturday as scheduled. Dee was quite disappointed and doesn't know when it will be printed now, but it is supposedly still in the wings.

Sally in North Idaho where it is hot now ... going to be 90 tomorrow. I loved the cool days!




Recommend Current pageAuthor Profile
Replies to this message


Re: My questionnaire arrived today

Re : My questionnaire arrived today --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Jun 19,2001,20:03 Top of Thread Archive
Hi Sally,
Glad that you finally got your questionnaire. Some of the questions are a little misleading or maybe I should say confusing. Like the one where they ask you to circle one for a diagnosis. Blepharospasm or Meige or Hemifacial Spasm or Oromandibular dystonia or Other. What if you have BEB, Meige, Apraxia and oromandibular dystonia? But you are to check just one.

I'm glad that they are doing it, though. Maybe it will help in some way. I'm willing to answer any of the questionnaires. I just want people to keep working and doing research on this.

It is good that you brought it up again, too, Sally, as that deadline is coming up.

I hope that your botox goes well for you tomorrow.

Tell Dee I'm sorry that they postponed her article. We need her back on here posting so that she can keep me out of trouble. I need someone to do "point-counter point" with. They will have to seat us on opposite sides of the conference or we'll both be sent to "time-out"

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: My questionnaire arrived today

Re : Re: My questionnaire arrived today --- Shirley-Arkansas-USA
Posted by Billie Lowe (billie lowe,Billie Lowe), Jun 19,2001,21:24 Top of Thread Archive
Shirley
My questionaire came about 2 weeks ago, thanks for the reminder that there was a deadline. I was out of town for a week and forgot about it. Would someone tell me what Myobloc means? Also, I don't think I know for sure how the bb works. I don't know what the top of the thread means. Sorry if that sounds dumb. If that's not too bad, I have a lot more dumb questions.
Billie



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re:Myobloc and bulletin board crash course

Re : Re: My questionnaire arrived today --- Billie Lowe
Posted by Shirley-Arkansas-USA , Jun 19,2001,21:49 Top of Thread Archive
Hi Billie,
There are no dumb questions. We've all asked them at one time or another. I'm the computer ditz of my family. My husband and both sons live and breathe computers. I just have to ask them my "dumb" questions.
Myobloc is another form of botulinum toxin. It is sometimes called Botox B. It was recently approved for cervical dystonia but I don't believe that it is approved yet for blepharospasm although some people are already getting it for blepharospasm. You would need to check with your insurance to see if they will pay for it since BEB is not one of the approved indications for use. My neurologist told me that it wasn't necessarily any better than Botox, just a different form of it and some people that didn't respond well to Botox might respond better to Myobloc. The Myobloc seems to be a little more painful when it is injected than the Botox. Dosages aren't well known yet with the Myobloc and the doctors are having to experiment with how much to give. Dosage calculations are different between the two and Myobloc has more of the botulinum toxin protein in it than does Botox which could possibly cause more antibody formation. Where Botox has to be handled very gently and is very fragile and has to remain frozen until it is reconstituted and used, Myobloc comes premixed and ready to draw up in a syringe and inject.

Threads-When you post a new message on a new subject by clicking on "Post Message" at the top of the bulletin board page, that will be the "top" of the thread. Other people that post or respond to that post will be the continuing thread. Sometimes the threads get real long and we start talking about things that didn't have anything to do with the original post.

You can always change the subject heading if you are talking about something different like I am with this post. I will go up to where it says "Subject" and click on it and delete it and put in what I want to.

You can also edit or change or delete your post once it is posted by opening your post and click on where it says "Edit" and make any changes that you need to and then click on "submit". When it is reposted it will then say at the bottom that it was modified by such and such at a certain time.

We need a basic bulletin board crash course. I certainly needed one when I first got on. Just play with things and keep asking questions.

Shirley in AR. Ready for your next question




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re:Myobloc and bulletin board crash course

Re : Re:Myobloc and bulletin board crash course --- Shirley-Arkansas-USA
Posted by Billie Lowe (billie lowe,Billie Lowe), Jun 19,2001,22:45 Top of Thread Archive
Thanks Shirley for the explaination, I have heard of Botox B, just didn't know it was also called Myobloc. In fact I had ask my doctor about it before. I just got my injections this morning. I usually go 8 weeks exactally, but this time I went about 5 days over since my doctor was on vacation and I was at camp. I have really been having trouble seing the last few days. The injections control everything pretty well except my eyelids. They are either droopy from the botox right after my injections or from the spasms when it's time for my next ones. I talked to Dr. Anderson about surgery at the conference. So far haven't done anything. He told me I had apraxia. I'm not sure that's spelled right. My doctor here thinks I should have surgery here in Kansas City, since there are doctors here that do that surgery. I'm not so sure of that. Especially since I know Dr. Anderson has done the surgery many times.
Thanks also for the crash course on the bulletin board. I printed it out so I can have it when I run into trouble again.
I wish I had someone in my house that was a computer whiz. My son-in-law is, but I worry that he gets tired of me asking all the time.
Billie



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re:Myobloc and bulletin board crash course

Re : Re: Re:Myobloc and bulletin board crash course --- Billie Lowe
Posted by Shirley-Arkansas-USA , Jun 20,2001,09:59 Top of Thread Archive
Billie, I'm with you in that I wanted the best person available to do my surgery. Dr. Anderson has done around 1000 of them now and keeps modifying and updating the procedure. There are others around that I'm sure do good work but do be safe and check on how often they do them and how many they have done. I've heard too many horror stories. I'm not saying that Dr. Anderson is the only competent surgeon out there for having myectomies done but one does have to be careful and check around. There are some other well qualified physicians out there but you need to ask a lot of questions.

I had the same problem with the apraxia that you are describing and that is why I had the surgery done. It has helped. I did not have to have the sling done, just the upper myectomy with ptosis repair and repair of the levator muscle that opens the eye. I still will have to have the botox for my lower lids but my eyes will now open because of the surgery.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: My questionnaire arrived today

Re : My questionnaire arrived today --- Sally - in - Idaho
Posted by Joanne Matuzas , Jun 20,2001,16:58 Top of Thread Archive
Hi Sally,
No, we are not illegal dope addicts!! :<) We just have this lousy
disorder and are trying to figure out how to get by and live as normally as we can the best way we know how. In other words, we must have it in
order to function on some level. I will put your friend on my prayer list. What is her name?

Make sure you get the survey in. Keep us posted re Dee's article and
get the poison with a smile!!! It's what we have now and I am grateful
we have it. Thinking of you tomorrow... Joanne M. San Diego, CA




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile