Need help...


Posted by Mike Dempsey , Apr 01,2001,15:45   Archive
My mother was finally diagonosed by her eye doctor with Blepharospasm after nearly two years of misery. She's been run thru the ringer... she has been told she had "dry eyes", been given repeated courses of antibiotics and has had her tear ducts plugged, etc... I've done some research on the web - and she clearly has blephospasm. Upon being diagnosed - she was told that "there used to be someone who did injections in the area... but they're not around anymore..." I would appreciated some advise as to how we should proceed. I find that hard to believe in this community of nearly 1/4 million people. Thanks!



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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by Virginia , Apr 01,2001,17:54 Top of Thread Archive
Mike,
The BEBRF keeps a list of doctors that they recommend for treatment of BEB. You can get their address if you click on the Welcome to Newcomers post at the top of the list.

Welcome to the BEB board. Several of our posters are in your situation - looking for help for family members. If you mother is able, she might like to read the posts herself and join in with us. If not, stay with us and we'll help you help her the best we can.

Your mother's journey to a diagnosis is not unusual. Many of us have gone through the same thing (I know, it doesn't make it any easier on her to hear this, but she's not alone). It also isn't unusual to have to travel to get proper treatment. Please contact the BEBRF office and they will send her additional info as well as the list of doctors. I hope she finds one that can help her.

Please feel free to ask anything. We'll help as best we can.

Virginia in AL, who goes all the way to Pensacola FL for treatment




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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by Delaine Inman , Apr 01,2001,18:12 Top of Thread Archive
Mike so glad you found us. I can say Virginia said exactly what you need to do. I was having to get someone drive me an hour to get Botox and the foundation nor any doctor I had seen for BEB knew of a doctor in my home town who treated BEB or gave Botox. I contacted the neurologists in the phone book and found 2 that see several patients. I have seen one and talked to the other and they both seem very capable. So don't give up. I did get both these neurologist in my home town to join the BEBRF and get on their mailing list and the list of doctors to refer patients. Tell your Mom hello and to not give up and have her ask anything or tell us anything if she wants to talk. She is not alone and neither or you.



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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by Sally - in - Idaho , Apr 01,2001,18:41 Top of Thread Archive
Hi Mike ... Welcome to you and your mom. You have been given good advice by Virginia and Delaine as to where to begin your search. What city do you live in?

Your mother's story sound ever so familiar. Very few of us get a correct diagnosis in any short frame of time. We have nearly all gone through the dry eyes, allergies, aging, whatever diagnoses as we became more and more frustrated and frightened.

You are a good son to care about finding help for your mother. Does she have a PC so she can visit on this board also? Nothing is ever considered too silly to ask about or brushed aside. There is always someone who will come on board and "talk" about the issue. We even have cyber parties and good times.

Hope you will stay around and bring your mother with you.

Sally in North Idaho




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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by Shirley-Arkansas-USA , Apr 01,2001,21:48 Top of Thread Archive
Hi Mike,
Welcome to the Blepharospasm bulletin board. There is lots of good and useful information here. The others have already pointed you in the right direction. I would also suggest that you look at the top of this bulletin board page and click on where it says "BEBRF Main Page". That will take you to the site where it describes all the symptoms and such of Blepharospasm. It is a rare disorder and sometimes is very difficult to find a qualified doctor. A neurologist who specializes in movement disorders will know about Blepharospasm. Do check with the BEBRF. You can find there address in the Welcome to Newcomers at the top of the page.
I see by your author profile that you are from Springfield, Missouri. Is that also where your mother lives? If you can't find anyone there locally, I travel from the Little Rock area to go to St.Louis, Missouri for my botox. There is a group there associated with Washington University at Barnes Jewish Hospital, that is wonderful. I see Dr. Joel Perlmutter there and one of the other ladies that posts on this board sees one of his associates. I can't think of his name right now. They give botox every Wednesday and are very competent and keep up with the latest. I know that is quite a drive for you but I had difficulty finding someone locally also and have been very satisfied with this group.
I have a feeling that you might be able to find someone locally, though. Do try a neurologist that specializes in movement disorders. Get out the old phone book and call some of them and ask.
Let us know how she does and ask whatever you like. I'm so glad that you are taking the time to help your mom. This is a very frustrating disorder and she needs to know that she is not alone and that there are people out there having the same quirky symptoms and problems that she is. I saw a number of doctors before I was finally diagnosed. I went through the irritation from the contacts, reaction to the eye drops I was using, put on antibiotic eye drops and then anti-inflammatory drops. Medrol dose pak for a "tic", and then several doctors telling me that they didn't know what was wrong with me. I had done some research myself and already knew what I had but nobody would agree. Told me that I was too young at 47 to have Blepharospasm.
If your mother doesn't use a computer, ask her what questions she has and you ask us. We're here to help.

Shirley in AR. One of the four chicken little sisters (Don't ask)




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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by June in Toronto (June Floyd,June in Toronto), Apr 02,2001,00:24 Top of Thread Archive
Hi Mike,

Welcome to the bulletin board. So sorry to hear your mother had such a run around getting a diagnosis - I did too, and finally diagnosed it myself after reading about it in a woman's magazine. My doctor, an opthalmologist and a neurologist all said it was "dry eyes, age and too much computer work" - I eventually went to another neurologist who diagnosed it correctly (after 2 years). I can't help with finding a doctor as I live in Canada, but you have come to the right place (this bb) for good help and advise. I hope your mother gets help soon and she is lucky to have you to help her. Best wishes to you both - stay around and post us more about your mother's situation.

June in Toronto




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Re: Need help...

Re : Need help... --- Mike Dempsey
Posted by Virginia , Apr 02,2001,08:00 Top of Thread Archive
Mike,
One thing I didn't mention in my first post is that the BEBRF has representatives in various geographical areas who are usually very knowledgeable about the treatment options and support groups available in their area. The BEBRF will let you know how to get in contact with the appropriate person who might know of someone locally or fairly close to your mother. Our rep has been really helpful to me.
Virginia in AL



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Re: Need help...

Re : Re: Need help... --- Virginia
Posted by colleen , Apr 02,2001,18:53 Top of Thread Archive
Hi Mike Welcome to the bb.Sorry that your mother has beb.I live in Southern IL & i go to Barnes Hospital the same as Shirley. I see Dr Racette. It is really a nice place the Doctors & all the staff are all great.

Best Wishes to your Mother. Ihave a son named Mike.

Colleen IL




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