Re: Support Group Questions and Information
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
Re: Support Group Questions and Information
How about calling it a condition? Ann D.
Re: Support Group Questions and Information
It has been called that, Ann.Christel in Ca.
Re: Disease or Condition?
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
Re: Disease or Condition?/Disorder
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
Re: Disease or Condition?/Disorder
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
Re: Disease or Condition?/Disorder/colleen
gosh colleen, i'm sure THAT was stressful.
Re: Neurological Disorder
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.
Re: Neurological Disorder/History has been made!
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
Re: Disease or Condition?/Disorder
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.
Re: Disease or Condition?
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
Re: Disease or Condition?
Dee,if that isn`t the(s--ts) nothing is!!!Lile ,Tx.
Re: Disease or Condition?dee
Re: Disease or Condition?dee
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
BEB/Movement Disorder
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!
Re: Disease or Condition?
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.
Re: Disease or Condition/Movement?
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....
Re: Disease or Condition?
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
Re: Support Group Questions and Information/june
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?
Re: What comes first the Chicken or The Egg?
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.
Re: What comes first the Chicken or The Egg?
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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