Support Group Questions and Information


Posted by June in Toronto (June Floyd,June in Toronto), Oct 22,2001,12:56   Archive
We had our yearly bebrf support group meeting yesterday. A neuro-ophthalm. (does surgery and gives botox) and an ophthalm. (gives botox) took questions. I asked about my sinus problem after receiving botox - apparently if injected in the lower, inner corner of eyelid, it can cause unsatisfactory tears that just run down the face (I've had them before) and/or a feeling of sinus or congested nose. I'm going to check that out with my next set of injections. If that is not the case, for me, it was suggested that I try and take an antihistamine just prior to the injections (Shirley suggested this also in a prior post, so as usual she's right on). Questions about dental anaesthesia were also asked (one person found it didn't work after botox injections, others asked if it could cause beb) - no conclusions.

I also asked about ongoing research and it appears that beb is a much more complex issue than it was first thought - so research is slow and some results don't always address beb but perhaps another movement disorder (another reason for the slow process). One of the docs suggested we use the word `disease' to describe beb as `condition' (or other term) he feels, discredits it. (we have discussed this before).

I took a copy of the cookbook in and tried to get people interested (only one woman took the information) - perhaps I'll get phone calls about it later. It was a good meeting - but too bad we only have one a year.

June in Toronto with beb (Blepharospasm) and Meige, where it is a beautiful day.

P.S. As I understand it from yesterday's meeting - meige can include beb, but people can have beb only without meige.


--modified by June in Toronto at Mon, Oct 22, 2001, 13:48:12




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Re: Support Group Questions and Information

Re : Support Group Questions and Information --- June in Toronto
Posted by Christel-California , Oct 22,2001,21:03 Top of Thread Archive
June, thanks for sharing all the support group news.
I, for one, will be happy to call this thing a disease.

Christel in Ca. wishing research would progress a littel faster




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Re: Support Group Questions and Information

Re : Re: Support Group Questions and Information --- Christel-California
Posted by Ann Doyle , Oct 23,2001,18:03 Top of Thread Archive
How about calling it a condition? Ann D.



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Re: Support Group Questions and Information

Re : Re: Support Group Questions and Information --- Ann Doyle
Posted by Christel-California , Oct 23,2001,20:30 Top of Thread Archive
It has been called that, Ann.

Christel in Ca.




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Re: Disease or Condition?

Re : Re: Support Group Questions and Information --- Ann Doyle
Posted by June in Toronto (June Floyd,June in Toronto), Oct 24,2001,12:31 Top of Thread Archive
Ann, the doctor at the support group meeting felt calling it a condition was down-grading it - calling it a disease would help others understand how bad it can be. Point taken for me.

June in Toronto who has beb/meige




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Re: Disease or Condition?/Disorder

Re : Re: Disease or Condition? --- June in Toronto
Posted by Dee in OR , Oct 24,2001,18:55 Top of Thread Archive
I think it is a disorder and not a disease. I believe a disease has a known cause, course, and is progressive, whereas a disorder is a group of symptoms with a mysterios cause, no common course and is not necessarily progressive.

Dee in OR




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Re: Disease or Condition?/Disorder

Re : Re: Disease or Condition?/Disorder --- Dee in OR
Posted by colleen , Oct 24,2001,19:54 Top of Thread Archive
When anyone asks me what i have i tell them that i have a
Neurological movement disorder called Dystonia that has many forms and the one i have is called Blepharospasm.If they really care i explain it to them.If they are beening nosey idont say any more.I believe i explain it more to Doctors .
Colleen in IL Where we had some bad storms a lot of wind some trees downand lots of rain. I drove 20 miles in it one way to pick up a grandgauther from school.Did ok drove with one hand had my ice pack in the other one




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Re: Disease or Condition?/Disorder/colleen

Re : Re: Disease or Condition?/Disorder --- colleen
Posted by kathy , Oct 25,2001,06:06 Top of Thread Archive
gosh colleen, i'm sure THAT was stressful.



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Re: Neurological Disorder

Re : Re: Disease or Condition?/Disorder --- Dee in OR
Posted by Shirley-Arkansas-USA , Oct 24,2001,20:55 Top of Thread Archive
Dee, I hate to say it, I really, really do but I AGREE with you. There, I said it. It was difficult but I got through it. I have always thought that "disorder" describes it best. "Disease" implies all that you mentioned and I feel that disorder describes it better than any other term.
Just my opinion and Dee's (could this be the start of an "agreement"?).

Shirley in Arkansas who has had a very windy day.




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Re: Neurological Disorder/History has been made!

Re : Re: Neurological Disorder --- Shirley-Arkansas-USA
Posted by Dee in OR , Oct 24,2001,23:18 Top of Thread Archive
Shirley,

I think we have just made BEB BB history - we actually agreed on something!!! I was hoping you would get in on this discussion.YEAH!!!!

Dee in OR where we had FROST this morning!

--modified by Dee in OR at Wed, Oct 24, 2001, 23:36:54




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Re: Disease or Condition?/Disorder

Re : Re: Disease or Condition?/Disorder --- Dee in OR
Posted by Delaine Inman , Oct 24,2001,22:08 Top of Thread Archive
Dee I think that is also the definition of disease and disorder by the book so to speak and even by the BEBRF as you've described. I do think that sometimes disorder may make it sound less important to those who don't know the medical difference of the two terms, so I can see why calling it a disease, even if it doesn't fit the criteria might give it more power. To be honest in terms of funding for research we are way down on the list of priorities and that is just a sad fact....there are thousands of weird disorders that we are in the company called not famous enough, not wide spread enough, and not public enough to warrant big bucks. I think our best hope is in the field of genetic research and other brain disorders that are getting more attention and the general field of brain research that someone someday will find what causes dystonias. It is always more profitable(for the pharmaceutical& medical community) to find a drug to relieve symptoms than to actually cure something. Sadly that is why Cancer and HIV still exist.



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Re: Disease or Condition?

Re : Re: Disease or Condition? --- June in Toronto
Posted by Dee in OR , Oct 24,2001,23:36 Top of Thread Archive
When I first got diagnosed with TD, I had to call my doctor for something and the receptionist asked if she could take a message. I said "I have a movement disorder" and she asked me how long it had been since I last "went". I said no, not that kind of a movement disorder, a neuromuscular movement disorder!! We got a big laugh out of that one!!

Dee in OR




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Re: Disease or Condition?

Re : Re: Disease or Condition? --- Dee in OR
Posted by Lile , Oct 25,2001,00:33 Top of Thread Archive
Dee,if that isn`t the(s--ts) nothing is!!!Lile ,Tx.



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Re: Disease or Condition?dee

Re : Re: Disease or Condition? --- Dee in OR
Posted by kathy , Oct 25,2001,06:10 Top of Thread Archive
that IS quite funny!



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Re: Disease or Condition?dee

Re : Re: Disease or Condition?dee --- kathy
Posted by Teresa Beaver (teresa beaver,Teresa Beaver), Oct 25,2001,08:52 Top of Thread Archive
I found this to be an interesting question. My Dr. has only said I have Blephaospasm, but then later stated that I had a brain disease, know as a movement disorder?? Go figure. He told me we would discuss it more next visit and try to give me a more complete diagnosis, whatever that means. Interesting question though, just had to put in my 2 cents.
Teresa
Bleph



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BEB/Movement Disorder

Re : Re: Disease or Condition?dee --- Teresa Beaver
Posted by Delaine Inman , Oct 25,2001,11:42 Top of Thread Archive
Well technically he isn't contradicting himself. BEB is a dyastonia of the eyes and could be called a form of movement disorder, even though it is usually not put in that category unless the movement (disorder) moves down into the face and you have Meige. The eye doctor will usually send you to a movement disorder specialist who is a neurologist to treat you. So any dystonia below the eyes is usually best treated by a neurologist who specializes in movement disorders. Was that clear as mud? Hopefully the person doing the consult won't send you to a bowel movement specialist, but if they mention colonoscopy instead of Botox....I'd get out of there quick!



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Re: Disease or Condition?

Re : Re: Disease or Condition? --- Dee in OR
Posted by Christel-California , Oct 25,2001,10:30 Top of Thread Archive
Dee, you got me L O L again this morning.

Christel in Ca. who is not a morning person and doesn't usually laugh in the morning, until all systems are awake, which takes a while.




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Re: Disease or Condition/Movement?

Re : Re: Disease or Condition? --- Dee in OR
Posted by June in Toronto (June Floyd,June in Toronto), Oct 25,2001,12:10 Top of Thread Archive
That's the best laugh I've had for a while Dee - what a hoot!

June in Toronto where its so windy and blustery today - temperature falling....




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Re: Disease or Condition?

Re : Re: Disease or Condition? --- June in Toronto
Posted by MaryNY , Oct 25,2001,20:06 Top of Thread Archive
I'll stick with, "I have a neurological condition called blepharospasm." If anyone wants more detail, I'm frank about it. You can usually tell when someone doesn't want to hear all of the details. But I do love to tell people that I have shots around my eyes every 8 weeks....they think I'm so brave! Mary



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Re: Support Group Questions and Information/june

Re : Support Group Questions and Information --- June in Toronto
Posted by kathy , Oct 24,2001,03:17 Top of Thread Archive
sounds like a great meeting june? what's wrong withthe term "disorder" as beb is not contagious? also which comes first, meige or beb? or did you get into this at all, since both can be progressive?



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Re: What comes first the Chicken or The Egg?

Re : Re: Support Group Questions and Information/june --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Oct 24,2001,12:29 Top of Thread Archive
Kathy, as the doctor explained at the meeting - referring to beb/meige, etc, as a disease might make people understand how devastating it can be for us. Referring to it as a condition, or disorder, seems to down-grade it! I think he's correct.
What came first? Some people get Meige (which can include beb or not). I guess (?) either can come first - with me it was definitely beb. Hope this somewhat explains.

June in Toronto who has beb and meige.




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Re: What comes first the Chicken or The Egg?

Re : Re: What comes first the Chicken or The Egg? --- June in Toronto
Posted by kathy , Oct 25,2001,06:04 Top of Thread Archive
sort of. everytime i call it a disease, people look oddly at me and move away, like it's contagious or something.



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