Looking for info


Posted by joanna , Sep 03,2001,13:59   Archive
I was diagnosed with bepharospasm about one month ago, and an appointment was set up for me to see a neuro-opthomologist in about a week and a half. The problem is that I have gotten much worse and am now experiencing spasms in my entire face and throat. This is all very new for me and very frightening. My question is, Where should I be going for help at this point?? Should I seek out a neurologist who specializes in movement disorders, or do you see a neuro-optho doctor for this?? I'd also like to here from anyone who can give me hope that this is treatable. Also, any suggestions for doctors in Baltimore or the surrounding areas that are good.

Thank You!!!!




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Re: Looking for info

Re : Looking for info --- joanna
Posted by June in Toronto (June Floyd,June in Toronto), Sep 03,2001,14:53 Top of Thread Archive
Hi Joanna, welcome to the bulletin board. I'm sorry you have been diagnosed with beb but you have come to the right place to get some answers and caring from the great people here. I think a neuro who specializes in movement disorders is who you really need to see. I have had beb/meige for over 6 years and am treated mainly with botox injections that help my condition quite a bit. Others receive medication as well as the injections and I'm sure they will answer your post. Meantime please don't be frightened, although I know that is easier said than done, and just take one day at a time until you see the specialist and hear what he/she has to say.

Take care and keep in touch

June in Toronto




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Re: Looking for info

Re : Re: Looking for info --- June in Toronto
Posted by kathy , Sep 08,2001,06:39 Top of Thread Archive
welcome joanna, gosh three of you now. i agree with june on the movement disorder specialist probably because you are having facial spasms as well. keep posting.



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Re: Looking for info

Re : Looking for info --- joanna
Posted by Virginia , Sep 03,2001,15:01 Top of Thread Archive
Welcome to the BB, Joanna. Since you seem to be new to this condition and are developing symptoms in places other than your eyes, I would think that a visit to a movement disorder specialist would be a good idea. Some of us visit several doctors for treatment or have to try more than one for successful treatment. At the outset, a lot of patience may be required to find the right doctor and the right treatment for your symptoms. For now, read as much as you can about BEB/Meige on the main pages of this website and ask questions here when you need to. Being well-informed about your condition is essential.

I recently got my first set of botox injections in my jaws and neck for symptoms there. They were given by a neuro-op, but I had seen a MDS who advised me on the desirability and location of the injections. Medications may also help the spasms.

Others, I hope, will answer your question about Baltimore doctors.

Please stay in touch and let us help whenever we can.

Virginia in AL




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Re: Looking for info

Re : Looking for info --- joanna
Posted by Kelly Saffell , Sep 03,2001,16:16 Top of Thread Archive
I am so sorry that your symptoms have progressed. I have had beb/meige for 6 years and see a neurologist (mds) for the meige and an opthomologist for the beb. I receive botox for eyes every 8 weeks and for jaw every 12. I am also on low doses of klonopin which does seem to help in conjunction with the botox but was ineffective on its own. I have to spread my tablet thoughout the day because it does make me drowsy and with a 3 and 6 year old "resting" is out of the question most of the time. The foundation can give you a list of doctors in your area. I still remember the fear that I felt right before I was diagnosed. My symptoms began gradually but once I began to worsen the progression was rapid. I had an appt. with a neurologist still weeks away and trying to work and care for my 9 mo old sent me into a deep depression. My husband called the neuro (he's a nurse) and got my appt moved up to the next day. With botox regularly I am able to function around the house and care for my kids so I feel that my overall treatment is a success. Feel free to ask any quesions and keep us posted on your progress.

God Bless,
Kelly in Dallas




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Re: Looking for info

Re : Looking for info --- joanna
Posted by Nilda Rendino , Sep 03,2001,17:31 Top of Thread Archive
Joanna get yourself to Johns Hopkins in Baltimore. If you wish, I'll send a copy of your posting to Dr. Miller, my neuro-opth there, and ask him for a recommendation as to what type of doctor you should start with in view of your symptoms. You can email me at VABEBRF@aol.com
Nilda

--modified by Nilda Rendino at Mon, Sep 03, 2001, 18:53:53




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Re: Looking for info

Re : Looking for info --- joanna
Posted by Pat Soulia , Sep 03,2001,18:30 Top of Thread Archive
Hi Joanna
Read your message re: being diagnosed with blepharospasm. I too have been diagnosed with this condition. I have this condition 4 years but was not diagnosed properly until 2 years ago. I saw a local doctor for botox injections for a year but was not satisfied.
I went to John Hopkins Hospital in Baltimore, Md. in January for another evaluation and I was diagnosed with blepharospasm also possibly Meige Syndrome which is facial spasms. I have been seeing Dr. Neil Miller who is a neuro-opthamologist at the Wilmer Eye Institute at John Hopkins since January and am very pleased with him and the results I am beginning to see. I get botox injections every 3 months (have had it done 3 times) so far. My husband and I travel 4 l/2 hours to Baltimore so that in itself tells you something about how I feel about Dr. Miller.
Please e-mail me at esoulia@enter.net if you would like his telephone number and where he is located.
Also, the bb has been a tremendous help. I have met so many great people and no matter how many questions you ask someone is always there to help you.
Keep in touch and good luck.
God Bless,
Pat Soulia in PA



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Re: Looking for info

Re : Looking for info --- joanna
Posted by Delaine Inman , Sep 03,2001,20:55 Top of Thread Archive
I'm so glad you got 2 responses about who to see in Baltimore. I changed doctors several times in 2 and a half years. I first saw a ophthalmologist the first few times then I saw a neuro-ophth until she did all she could do. I've been seeing a neurologist since Jan. So sorry you have this disorder, but you've come to the right place for info and support. Hang in there and don't give up until you find a doctor you really like that can help you. Also find a local support group through the BEBRF. Good luck.



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Re: Looking for info

Re : Looking for info --- joanna
Posted by Nancy Pfaff , Sep 03,2001,22:14 Top of Thread Archive
I was diagnosed 4 years ago in Dec. But, please don't let that discourage you. I have Beb/ Meige. I started out with blinking and droopy eyes. Then my eyes completely clamped shut and I couldn't even pry them open with my fingers. Suddenly my nose would twitch, my mouth would draw up to my nose, and finally my right cheek pulled up toward my right eye. I went to 7 different Doctors before being diagnosed. It a neurologist that gave me hope. He put me on Ativan and suggested I receive Botox injections. I was fortunate that I got a diagnosis in 3 months. I did have acupuncture for a while and my cheek stopped drawing up. That was before botox. I'm convinced the acupuncture helped that. But I have received Botox for the past 4 years and it has done wonders for me. It took a few months for the Doctor to get the right dosage and sights that helped me the most. I didn't' drive for 8 months but went back to work after being off for 3 months. I now drive, read, watch TV, and believe or not work. I have a new job that I have had for 6 months now. I lost my job after 20 years with the same company with downsizing. That about did me in as well as the BEB. With lots of prayers and support from friends and family I lead a great life again. This Bulletin Board gave me such wonderful support and new friends. I didn't feel alone anymore. Keep in touch with all here and you won't feel alone. You will get better. The foundation has been wonderful for all of us who found it. Gosh I guess I better put some tape over my mouth or thoughts. Ha! Ha! Love to all Nancy in So. Calif.



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Re: Looking for info

Re : Re: Looking for info --- Nancy Pfaff
Posted by Ann Doyle , Sep 04,2001,06:45 Top of Thread Archive
I too have BEB/Meige. I go to a neurologist who specializes in movement disorders for Botox. I had good results from the beginning. I have to travel 2 1/2 hours one way but it is worth it. Others travel up to 4 1/2 hours one way. That should let you know that the person giving the Botox is very important. If the first one dosen't work you could change or work with them . Find out how many units you are getting and where the sites are and what size needle they are using, How often they administer Botox.
My doctor so far has only given them to me every 3 months. I am hoping he will give them every 2 1/2 months. They wear off the last 2 or 3 weeks and I take klonopin which retards the spasms a little bit but not until it's time for the next klonopin. Klonopin also has a side effect of depression for me (not for all) so I take Zoloft. That combination is pretty common with BEB/Meige . I get the klonopin and zoloft from my family physician who works with me. I can see him here in town on a regular basis and by trial and error and conditions changing , it just seems the thing to do. Ann Doyle




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Re: Memories

Re : Re: Looking for info --- Nancy Pfaff
Posted by Shirley-Arkansas-USA , Sep 04,2001,09:30 Top of Thread Archive
Hi Nancy,
We haven't heard from you in a long time. I'm glad to hear that you are doing as well as you are and able to work. I remember seeing your picture from the 99 conference in California. That was the first year that I was on the bb and I have those pictures ingrained in my brain. I may have forgotten a lot of other things but I so desperately wanted to go to that conference as this was all so new to me and I was scared and wanted to learn as much as I could. I printed those pictures out and still go back and look at them. They just made me feel better about everything-to have pictures of people with the same problem that I had. I thank you for being around at that time for me and many others.
I'm glad that you are still checking in with us. Thanks for posting. Don't you dare put any tape over that mouth. I love hearing from you as I'm sure others have, also.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Tue, Sep 04, 2001, 09:33:45




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Re: Looking for info

Re : Re: Looking for info --- Nancy Pfaff
Posted by Mindy , Sep 04,2001,14:27 Top of Thread Archive
Hi Nancy,
It's so good to see you here again :-)
It's wonderful to hear you are still doing so well.
Nancy please stick around as a friend and as an encouragement especially for the new people.

Mindy in NY whose computer is down, and I have to go into my deep breathing mode before I explode.




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Re: Computer down

Re : Re: Looking for info --- Mindy
Posted by Shirley-Arkansas-USA , Sep 04,2001,15:11 Top of Thread Archive
Not that Mindy! Did my pictures crash it? My sympathies are with you in this time of stress and upheaval. Breathe deeply and please do not explode. Hopefully your PC will get well quickly.

Shirley in AR.who has gone through PC withdrawal a couple of times. It is not a pretty sight.




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Re: Looking for info

Re : Re: Looking for info --- Mindy
Posted by Nancy Pfaff , Sep 04,2001,21:25 Top of Thread Archive
Thank you for remembering me. I don't post as often as I did a year ago or so but I read what everyone is doing and saying. Would have loved to have gone to the conference this year. I almost lost my husband in March to pneumonia. He is doing fine now but we had a good scare. He still takes it easy. Love Nancy



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Re: Looking for info

Re : Re: Looking for info --- Nancy Pfaff
Posted by Christel-California , Sep 04,2001,22:35 Top of Thread Archive
Hi Nancy, happy to hear you are doing so well. Your post was very encouraging. Just curious, where in So. Ca. do you live?

Christel in the So. Ca. desert where the sharks can't get us.




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Re: Looking for info

Re : Looking for info --- joanna
Posted by joanna , Sep 08,2001,00:23 Top of Thread Archive
Just wanted to update on my treatment. I was able to see a neuro-opth doctor today who was very good. He injected botox around my eyes, face and neck.. I have gotten some relief already, although I won't know for sure for several days. He also put me on klonopin and referred me to a neurologist. Right now I am optimistic that I will be at least driving again soon. Thanks for your concern. I'll keep you updated.



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