Post-conference question


Posted by Mindy , Aug 24,2001,20:07   Archive
Is there any new information regarding any aspect
of BEB?
thanks,
Mindy



Recommend Current pageAuthor Profile
Replies to this message


Re: Post-conference question

Re : Post-conference question --- Mindy
Posted by kathy , Aug 25,2001,17:05 Top of Thread Archive
yes mindy i agree that it might be time to address some of these issues and questions. anyone that went have some comments or info?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question / those of you who went

Re : Post-conference question --- Mindy
Posted by kathy , Aug 28,2001,06:04 Top of Thread Archive
could some of you respond to us on this, please.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Post-conference question --- Mindy
Posted by Lynn Yarbrough , Aug 28,2001,14:21 Top of Thread Archive
The conference was something of a disappointment to me because there was so little new said about BEB. There was a significant amount of discussion of Myobloc, which I think we have covered fairly well, and about the similarity of dystonias and their treatment, but nothing stands out for me. The expertise and compassion shown by the medical people was impressive, especially the improvement in surgical treatment over the years. There is hope for the future, but it's slow in coming.

Then why have the conference? Because fellowship with the rest of us is so fruitful, in understanding how to deal with BEB on a personal level.

--- Lynn




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Re: Post-conference question --- Lynn Yarbrough
Posted by kathy , Aug 29,2001,05:29 Top of Thread Archive
that alone is why i think it is worth it, the fellowship and mutual support. it's good that you are honest about your answer to the question. maybe there in the midst of new discoveries.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Post-conference question --- Mindy
Posted by Shirley-Arkansas-USA , Aug 28,2001,17:35 Top of Thread Archive
Sorry Mindy and Kathy that none of us has jumped on this. I did tremendously enjoy the conference but I agree with Lynn in that there wasn't any outstanding "new" information. I did enjoy the doctor's presentations and the social aspect of the conference. It is helpful to know that there are doctors out there working for us and doing research and improving surgical techniques and verifying that you don't have to get a ptosis if your doctor injects you properly. A lot of the stuff that was talked about and the questions that were asked and answered, we have already talked about on the bulletin board. (Even the term anismus was brought up and discussed) The bb regulars already knew what that was as we had discussed it here. I'm not trying to downplay the importance of the conference. It is quite important and I will attend everyone that I can.

There were approximately 250 people that attended last year's conference. This year there were 340 people with approximately 30 physicians. We need to work on our doctors that are treating us and try to get them to attend the conferences or send their nurse. Someone mentioned that they knew of a doctor that did that. We can all get started working on that right away. Let them know that the conference is going to be in Houston, Texas.

The Allergan rep said that the cost of botox had increased somewhat and that it was now $392.00 per vial. That is Allergan's charge.

Many of the questions that I turned in from the bb were not responded to. I'm not sure why. A lot of questions are turned in to be asked of the doctors and there is not enough time for all of them to be answered. The question that Kelly posed about the possibility of a cure was touched on in the doctor's lecture. Dr. Bressman was ill and could not attend the conference so Dr. Adler did the genetic presentation. Nothing was mentioned (that I remember) about a current drug being used that could "fix or cure" any dystonia. They are working on trying to isolate genes for certain dystonias and have already done so with certain ones-BEB is not one of them and Dr. Adler related that it would not be an easy one to find.

Cynthia's question about the surgery being done without the cosmesis portion was not answered. There are doctors out there (good ones) that do the surgery without the cosmetic portion. I think that this question would just have to be posed by the individual to the doctor that they choose and the financial situation would just have to be addressed on an individual basis. Some doctors will work with you on this and even discount their fees.

Lyn's question about a stronger botox wasn't actually addressed but to my knowledge and from what they said at the conference, there is only one strength of Botox. I still believe that the doctor might have been referring to the fact that he mixed it with a lesser amount of normal saline, thus making the amount that he injected less in volume but stronger in units of botox.

Scott's question regarding the drug Isoptin that he is taking and it is helping, also was not answered per say but it was said that "all drugs work and no drugs work". There are drugs or alternative things out there that do work for some people and no one knows why. There are just not enough people that these things help to say why they work.

Kathy had asked about the Doxil trials. Dr. Wirtschafter who is conducting these trials was not in attendance this year. The trials are ongoing. A couple of the doctors did say that although the trials are still ongoing that they do not feel that this is a very promising treatment/cure for Blepharospasm. They feel that there is too much room for error when injecting. We all know how differently doctors do our botox injections and the problems that we have with them. These same problems could happen when injecting Doxil but they would be permanent and not temporary. I tend to agree that this probably is not going to be promising treatment option.

Blood work for the genetic studies that Dr. Bressman will be working on could not be drawn at the conference due to motel liability. So far, 1100 surveys have been returned.

I can't think of anything else right now and this is long enough anyway. Please, any of you that went to the conference, correct me if I'm wrong on any of this. Or add to it.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Wed, Aug 29, 2001, 12:14:51




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question - Thank you

Re : Re: Post-conference question --- Shirley-Arkansas-USA
Posted by Mindy , Aug 28,2001,18:58 Top of Thread Archive
Lynn and Shirley,
I appreciate both of your replies, thank you.
It's always comforting and hopeful to hear of ongoing research
and improving surgery.
Shirley, I don't feel your informative post was long at all,
every little bit helps.
Mindy in NY

--modified by Mindy at Tue, Aug 28, 2001, 19:00:26




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question - Thank you

Re : Re: Post-conference question - Thank you --- Mindy
Posted by kathy , Aug 29,2001,05:38 Top of Thread Archive
yes thank you for the time you spent on this, altho it is not exactly what i was hoping to hear. i personnally was somewhat disappointed to see that Shirley was not wearing cowboy boots, from the photos. i definitely would have joined her on that.
by the way, they covered this college crunch situation on world news tonight, last night. it is no joke. they are putting some kids up in hotel rooms due to lack of dorm space.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re-Boots and dorm rooms- ;-)

Re : Re: Post-conference question - Thank you --- kathy
Posted by Shirley-Arkansas-USA , Aug 29,2001,11:13 Top of Thread Archive
Sorry about the boots, Kathy. It was just too hot to wear boots. Dr.Anderson didn't have them on all the time, either. I caught him early one morning out jogging. No boots-I couldn't believe it. I must say that he does look good in a tank top, dark wraparound glasses and sweat. I didn't check out the shoes, but I'm almost positive that he wasn't wearing those boots. Yes, people, you do sweat in Arizona.

I saw the college dorm issue on TV, also. They have for several years now, anyway, been putting kids up in motel rooms as a transitional thing until a dorm room opened up at some of the colleges here in Arkansas.
My son's dorm room was inadvertently given away (their error) and they were going to put him in transitional housing until a room became available but in his complaining about the situation to a college friend who happened to have a single room, the friend offered to share his room with my son. Even the single rooms are furnished for two. After my son and his friend did some more talking, James accepted the offer and the college approved the change of plans. So, at least he has a room and room mate that he likes and knows. Happy ending.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and dorm rooms- ;-)

Re : Re-Boots and dorm rooms- ;-) --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,08:00 Top of Thread Archive
good.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and dorm rooms- ;-)

Re : Re-Boots and dorm rooms- ;-) --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,08:00 Top of Thread Archive
good.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and dorm rooms- ;-)

Re : Re-Boots and dorm rooms- ;-) --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,10:27 Top of Thread Archive
shirley, could you please e-mail me some of those action shots you took of Dr. A running, i wouldn't mind seeing them. are you sure your husband doesn't mind your adulation of him? i mean just because you're trying to set us all up for surgery with him because he's so handsome.


Kathy who just ate an entire plate of barbequed spare ribs during a "female" day, took a B-vitamin and thinks she's starting to feel better.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and jealousy

Re : Re: Re-Boots and dorm rooms- ;-) --- kathy
Posted by Shirley-Arkansas-USA , Aug 30,2001,14:21 Top of Thread Archive
Kathy, I'm sorry to disappoint you but I have no action shots of Dr. A. I have a couple of him on a group Doctor panel and one with Dr. Baker that my husband took. In fact my husband was the one that took that particular picture of Dr. Anderson's boots that was posted. Of course I was right there telling him to take it. I have witnesses.
When I saw him in his jogging clothes, I was talking with the Allergan Rep. He was jogging by and stopped and talked to us. No pictures.

You haven't been reading my posts carefully, enough. :-) I am not pushing surgery for anyone. I am pushing that if people do elect to have surgery done that they go to someone that is an expert at doing the surgery. There are, I think, very few that are really good at it and in my opinion, Dr. Anderson is the most qualified. And he is handsome and I do like his personality.

No, my husband is not jealous. We really have never had a jealousy problem-don't really give each other any good ammunition to use for jealousy. We do most everything together. I was jealous of a cat once that he petted more than me( I finally started meowing but it didn't work) I think at times he has been jealous of the time and attention that I have lavished on our sons but that is about it. So don't you worry about it, cause Roy and I are fine.

Did the spare-ribs make you feel better or the B vitamin?

Shirley in AR.where it is a little cooler today




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and jealousy

Re : Re: Re-Boots and jealousy --- Shirley-Arkansas-USA
Posted by kathy , Sep 01,2001,07:14 Top of Thread Archive
i was just giving you a hard time, i'm sure you realize that and your husband too. i'm probably jealous that i couldn't go to the conference, no not jealous, just disappointed.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and jealousy

Re : Re: Re-Boots and jealousy --- kathy
Posted by Shirley-Arkansas-USA , Sep 01,2001,12:29 Top of Thread Archive
Tis fine Kathy, We have been taking it all in a fun way. But I did want to make sure that you knew that Roy and I don't have a jealousy problem since I do tease about Dr. A an awful lot. It is all talk and meant in fun, also.
I'm sorry that you couldn't go to the conference, too. Maybe you will be able to attend next year.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re-Boots and dorm rooms- ;-)/commission for Shirley??

Re : Re: Re-Boots and dorm rooms- ;-) --- kathy
Posted by Sally - in - Idaho , Aug 30,2001,18:37 Top of Thread Archive
I wonder if Shirley gets a commission for sending patients to the man. She surely does a lot of PR for him! HMMMMMMMM..

Sally, training to be a PI like Magnum




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: ;-)/commission for Shirley??

Re : Re: Re-Boots and dorm rooms- ;-)/commission for Shirley?? --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 30,2001,18:54 Top of Thread Archive
No commission for me. I really should get one, don't you think? The sad thing is that he doesn't "do" computers. The man had trouble working his laser pointer at the conference, which I thought was extremely funny. Apparently, he doesn't have that kind of problem operating on people, though(I hope!). Doesn't appear to.

You'll make a great PI, Sally. Let me know if I can help-in the background, though.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: ;-)/commission for Shirley??

Re : Re: ;-)/commission for Shirley?? --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 30,2001,18:57 Top of Thread Archive
Listen for the ding-a-ling of your phone.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Phone call

Re : Re: ;-)/commission for Shirley?? --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 30,2001,20:18 Top of Thread Archive
Got it. Thanks for the call. It was nice talking to you.
You're a fine lady but if you think that you are going to get information or should we say the inside scoop on Roy's underwear before the rest of the world does-well, it just isn't going to happen.

Since you mentioned the modeling thing, Roy is after me to do a photo shoot now. This is all going to his head. I won't be able to live with him. He's up there going through his drawers (drawers?) now to see what he would look best in. I guess that we shouldn't post them on the bb. Naw.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Re: Post-conference question --- Shirley-Arkansas-USA
Posted by Joanne Matuzas , Aug 29,2001,09:05 Top of Thread Archive
Thank you Shirley for representing those of us who attended the conference with that thorough response and Lynn for his thoughts as
well. For me the conference is an "experience" which we can tell you about from our own perspective, but in my opinion, one needs to be
there in order to understand its place with our disorder. Every aspect held some nugget for me and how can I describe the joy of meeting these
wonderful friends on the bb? Being in a room with all these folks with
this disorder and feeling the hope, and energy? Doctors who are taking their time and energy to help find the cause and cure? Those other blephros who are taking leadership roles and encouraging us on an emotional and spiritual level? I think the last item was the most important for me. I hope that those of you who have not attended a conference will be able to do so in the future. Joanne M. San Diego, CA



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Re: Post-conference question --- Shirley-Arkansas-USA
Posted by Virginia , Aug 29,2001,15:15 Top of Thread Archive
Guess I'll throw my 2 cents worth in here, too. No, there wasn't much new information passed on during the lectures. But one of the things I like about the conferences is being able to talk one on one with the doctors. I was able to ask questions about medication that I had been wondering about. Might not be big news to anyone else, but it was a help to me.

One thing that hasn't been mentioned that I didn't know about previously was the Mexilitene study for treatment of BEB. It is an antiarrythmic (as is Isoptin, although a different kind). This medication had been previously used somewhat successfully in Japan where botox was only recently made available. That could provide relief for those who don't respond to other medications.

It is always encouraging to hear about the research being done. Maybe they don't have a cure yet, but knowing that they are continually learning new things about how our brains and bodies work is important to me. Someday they may just figure it all out.

Virginia in AL




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question

Re : Re: Post-conference question --- Virginia
Posted by Scott Harvey , Aug 30,2001,10:23 Top of Thread Archive
Virginia

Very interested to hear about the study with Mexilitene given the results I have had with Isoptin. (Although that isn't working at the moment and am back to the clonazepam with equally lousy results). I was intereested in looking at the internet about Mexilitene and some of the results I found involved using Mexilitene for myotonia which naturally led on to some stuff about eyelid myotonia. Does anyone know much about this area. It is something that I would be interested pursuing as whilst I have been diagnosed with BEB I sometimes wonder.

I very rarwly get any degree of spasm - the eyes are usually opened or closed - at the moment very closed -about 1/8 of the right eye only open. as I said they are curently bombarding me with clonazepam 6-8 tabs a day which means I am sleeping most of the time but of course as you would all know it is not necessarily when you want to sleep currently 1 o'clock int the morning here.

Lookingh forward to some wisdom on myotonia and any further info on the study using mexiliitene.


Scott




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Scott/clonzapam

Re : Re: Post-conference question --- Scott Harvey
Posted by Mindy , Aug 30,2001,12:49 Top of Thread Archive
Hi Scott,
Sorry, can't help you with eyelid myotonia, you've made me curious.
What I did want to say is for me, when I'm tired my eyes
will spasm and close. I have found it to be much worse when the tiredness comes from the meds. If the med. is not helping your eyes,
there is no need to be on that dose. You can check with your doctor.
I always cut back slower than what they tell me, because I've learned my body response the hard way. This has helped me many times,
I hope it can help you.
Mindy in NY



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

Re : Re: Scott/clonzapam --- Mindy
Posted by Virginia , Aug 30,2001,14:38 Top of Thread Archive
Mindy,
I had a problem cutting back too quickly, too. At the conference I asked Dr. Daroff about cutting back and he said cut back 1/2 of a .5 mg tablet a MONTH and when I got down to the last 1/2, go to 1/2 every other day for a month. Obviously, it's only one doctor's recommendation, but he has done a lot of studying on medications. It probably depends on how long you have been taking it, too.

Virginia in AL




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question/Mexiletine

Re : Re: Post-conference question --- Scott Harvey
Posted by Shirley-Arkansas-USA , Aug 30,2001,14:54 Top of Thread Archive
Hi Scott, I don't know anything about myotonia but I'll give you a little more info on Mexiletine. They mentioned it at the conference last year, also.

In Dr. Daroff's talk this year at the conference, he related that Mexiletine is a form of oral lidocaine used as a cardiac anti-arrhythmic agent. The report studied three patients (Japanese Study in 1999) and all three responded favorably to the drug. They continued to have increased blink rates, but their forced spasmodic eye closure was substantially reduced and they reported improvement in their functional state. Patients were started on 50mg three times a day and dosages increased until maximum benefit was obtained or side effects were encountered. The three patients final doses were 450mg, 700mg and 750mg per day. The most common side effects were heartburn, nausea, lethargy, ataxia, (the inability to control the position of ones arms and legs or posture)and tremor. In the US, the smallest preparation of Mexiletine is a 150mg capsule. Dr. Daroff recommends opening a capsule and splitting the ingredients and starting at 75mg twice daily, but only after a cardiac evaluation and approval.
Dr. Daroff received further information in July of 2000 and as of that time Botox had been approved in Japan and was being used. Five patients who had improved on Mexiletine did better with Botox than with the mexiletine. Two of these continue to take Mexiletine between Botox injections. So he feels that mexiletine may be a useful treatment option to be used along with Botox.
Most of this information was taken from our Dr. Daroff's written material that was handed out in our conference notebooks. It may be written up in the next newsletter.


--modified by Shirley-Arkansas-USA at Thu, Aug 30, 2001, 14:55:20




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Post-conference question /Doxil

Re : Re: Post-conference question --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,08:07 Top of Thread Archive
well why is it that noone that has had this treatment has posted anything about it. are they not aware of the bulletin board?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re:Doxil and Posting and PC's

Re : Re: Post-conference question /Doxil --- kathy
Posted by Shirley-Arkansas-USA , Aug 30,2001,09:23 Top of Thread Archive
Kathy, as far as I know, there are very few people that have completed the Doxil trial and I'm not sure how many are participating in this latest trial. I have no idea why they don't post on the bb. They may read it and not post as many do (like Tim DID);-) or they may not even be aware of the bb. People that don't usually use computers aren't going to be too interested in this forum. The vast number of people with BEB are (I'm just guessing here) probably in the 60 plus range and a large majority of these people have never used a computer and have no intention of doing so. I'm 49 and I had to be forced into it two years ago. Computers are scary if you haven't used them before and lots of people don't have a support system that is computer literate like I do. They get me through most of my PC problems. I believe that your significant other "Phil" helps you out with some of your computer problems. I don't believe that I would be here if my family had not totally set me up with it and showed me what button to push. It took me forever to get used to the mouse.

I am amazed at the willpower and strength and courage that it has taken some of the people that do post on this board, to do so. Not everyone is even willing to try. My hat (visor) is off to them.

Hopefully if someone is reading and not posting and has or is participating in the studies, they will post. I know that all of us are very interested in this form of treatment and would like to hear from a real person that is trying it.

Another conference thought-Mary Lou Thompson said at the conference that a good 75% of the new people that contact the BEBRF office, do so via the internet. I do believe that if ever there was a question about the website or this bulletin board and its usefulness and purpose that it is being brought to light now.

Shirley in AR. it's a brand new day.

--modified by Shirley-Arkansas-USA at Thu, Aug 30, 2001, 09:24:37

--modified by Shirley-Arkansas-USA at Thu, Aug 30, 2001, 09:25:36




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re:Doxil and Posting and PC's

Re : Re:Doxil and Posting and PC's --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,10:33 Top of Thread Archive
okay , thanks, i wondered about the computer thing. Phil only helps me when he's in the mood and is feeling somewhat patient and kindly as i am so "untrained". when i first got my computer i had very bad"computerphobia". i was literally terrified of it, you can see i am overcoming that now.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Re: To the "non-posters"

Re : Re: Re:Doxil and Posting and PC's --- kathy
Posted by Mindy , Aug 30,2001,13:09 Top of Thread Archive
There are 353 registered members of this board since last year.
Since l993 there are 598 registered members.
I'm not sure, but I think they only have to register if they want to post or reply to a post.
I would like to make a plea to all the readers out there,
If you are doing something that has helped you, please share.
If you are going to a great doctor, please share.
If you know something to avoid, please share.
Helping us to know we are not alone would be a blessing.
thank you,
Mindy in NY



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: To the "non-posters"

Re : Re: Re: To the "non-posters" --- Mindy
Posted by kathy , Aug 30,2001,13:33 Top of Thread Archive
mindy, thank you. that's what i was trying to say.



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