Re: Botox-B
Marie:Nice to meet you! Has the Neuro given you shots in the eye lid/lash line areas? Tell us a bit about yourself if you wouldn't mind sharing. Botox B has mainly been used for Cervical Dystonia I'm not sure very many with Blepharospasm have used it yet. Correct me people if I'm wrong. Judy
Re: Botox-B
Hi Judy, thanks for the nice welcome. I feel very alone here since no one seems to understand my problem. My husband is wonderful and he does all the driving. I will see the Neuro next week and I will be ready with all sorts of questions based on your suggestions.
I am 63 yrs old, not working (due to eyes) and married less than 1 yr to Mr. Wonderful. Personally have 4 kids, 5 grandkids, and 1 great grandson. Now, we added Victor's to make a total of about 22 offspring. But who's counting??? Marie in Florida where it is easy to rest.
Re: Botox-B
Marie:You need never be alone, though we all feel that way at times. Friends are all but a keystroke away. We understand. Judy
Re: Botox-B
Hello Marie, I have had BEB for 6 years, have been getting botox about every 5 or 6 months, need it more often, but make it due as long as I can, I am the old lady of the group, I think, will be 72 in a week. Spend the winter in Bonita Springs Fl. Where do you live in Fl.? Am in Ohio for the summer. This is a great group of people here, they will answer most of your questions. Edith Nalepa
Re: Botox-B
Hello Edith. You sound well and hardy. We live on the west coast .. Port Charlotte .. We will be going North to visit the kids this summer. First stop will be columbus, ohio tovisit my daughter and her family -- including my 2 yr old great grandson. Are you near there? We are from NJ but moved here about 5 yrs ago. Love it. Thanks for the words of encourgement. They mean a lot.
Marie in Sunny Fla
Re: Botox-B
Hello Marie, hope you are feeling well today. Port Charlotte is about 70 miles N. of Bonita on the west coast. We have a son who lives N. of Columbus, we live 150 miles N. of him in Cortland. Sure could use some Fl. sunshine.Edith in dreary Ohio
Re: Botox-B
Sorry, Judy, I did not answer your question. I have had injections in the eyelids, beneath the eyes, and at the outside corner muscles. None has been painful ... once I was able to relax enough to have it done. I find my eyes are soothed by focusing on my needlework. It feels restful not to be fighting the spasms.Marie in Florida, looking forward to a quiet afternoon
Re: Botox-B
Hi Marie,
Welcome to the bulletin board. It is my understanding that Myobloc or Botox B does not yet have FDA approval for use on Blepharospasm. It does for cervical dystonia. You might have difficulty getting your insurance to pay for it for BEB under the FDA's indications for its use. Some of the people on this board have used it and maybe they will respond. My neurologist told me that it wasn't necessarily better, just another option, especially for those that Botox A doesn't seem to help. He also said that it did seem to hurt patients a little more than Botox A does. The doctors are still experimenting with the dosages of Myobloc. I'd check with my insurance to see if they will pay for it.
It sometimes takes a while to find the correct sites and dosage for the botox. Before my surgery, I was taking 100 units of Botox A, total.
If you like your doctor, work with him or her. If after a time, you don't feel that you are getting anywhere, see someone else. Different doctors have different techniques for the injections and different just might work.Let us know how you do. Ask whatever you like. Again, welcome to the bb. Shirley in AR.
Re: Botox-B
Hi Shirley. Thanks for your suggestions. I notice you seem to have many answers. Obviously, you have been fighting the good fight a long time. I was diagnosed in Sept, but I am bound and determined to find what is right for me so that I can regain at least a little control of my life.
What is dystonia? Also, I will take your suggestion and check on the insurance coverage. These treatments have been extremely expensive so far. Thankfully, everything has been covered ...with the exception of the acupuncture.Marie in Sunny Florida
Re:Questions
Marie,
I was diagnosed about 2 years ago at the age of 47. I was a school nurse at the time and just barely managed to finish out the school year before my world came tumbling down. I probably started having symptoms about 5-6 months before I got a diagnosis. I thought that it was contact lens problems and or stress. I was diagnosed rather quickly so guess that I was lucky that way. The botox just didn't work out very well and my first botox doctor didn't give me a lot of helpful advice. He didn't like my questions and I wasn't responding to his normal way of doing things so we had a parting of the ways. I couldn't take his ego and looked elsewhere and found a very competent and compassionate Neurologist that doesn't mind my questions. He will tease me about all my questions and roll his eyes and then turn right around and tell me of a patient that he has just seen that had BEB for years and was not getting results and had come to him but didn't even know how much botox he had been getting or where the injections were given. He says that he simply can't believe that people don't get more involved in their care and know what is going on. You have to ask questions. If your doc doesn't like it, find somebody else.Dystonia means an abnormal sustained contraction or spasm of muscle.
Blepharospasm is a focal or localized form of dystonia. There are many different forms of dystonia. If you have not contacted the BEBRF for their information packet, take the time to do that. Their address is in the "Welcome to Newcomers" at the top of this page. Also check out the "BEBRF Main Pages." You will find lots of useful medical information there.
Shirley in AR.
Re: Re:Questions
is apraxia a dystonia? or is it just a worse form of BEB?
Apraxia
Re: Botox-B
Hi Marie,Welcome to the BEB Bulletin Board. Sorry you need to be here, but it's a pretty good place to come for answers to questions, helpful hints, a bit of humor, and people who will listen to you vent your frustrations. Ask your questions and offer your suggestions. There is always someone around to answer back. It sounds like you have a happy mixture of jumbled up family. I am 66 and have "Officially" had blepharospasm for two years. Symptoms long before that. I was a school librarian/secretary in the working world. My husband is a retired farmer who still works! So he is rarely available or willing to drive me around. Come back often. Sally in North Idaho
Re: Botox-B
Hi Sally, thanks for the kind words. I had the symptoms for about 2 yrs, but they were fairly mild ... light sensitivity, light spasms when I was under any pressure or stress ... on the job (I was an office manager) or when with family or friends. An optho said I had nothing wrong with my eyes. I stopped the job because it wasn't worth getting upset about and I concentrated on what we really love... selling and buying antiques. I worked part time at an antique mall while enjoying our hobby. At the time I had some instances of spasms, but I kept it hidden. My husband was diagnosed with cancer last year and at that time my eyes were completely beserk. I still kept it secret until after he was home and my family just nagged me to death. I knew the spasms were caused by stress, but I didn't really understand it myself.
Finally went to my doc who prescribed Buspar and said to get my eyes examined again. Thought it was due to age (???) and a lack of seratonin. The optho (#2) diagnosed me right away. I was so relieved, but I really thought it would be all over very soon. And here I am, 9 months later.
Thanks for listening. I will be back ... a lot.Marie in Florida
Re: Botox-B
Good to see you again, Marie. You "thought it would all be over soon" ... wishful thinking. It seems that it's never over. But we can hope and pray for a breakthrough and cure.Glad you will be here often! It's fun getting acquainted and making new friends. Sally in North Idaho
Re: Botox-B
Welcome to the bb. I have not had experience with botox b but have been receiving botox a for 5 years. I had to go to 3 doctors to get the medical results and compassion that I needed. I was diagnosed at the age of 26 (now 32) and my girls are 6 and 3. I received botox during my second pregnancy. My doctor is great and I found him thru the foundation. I finally quit my job as a cpa 18 months ago and the injections work better for me now. They were only lasting 3 weeks and now I receive them every 8 weeks but at least I can give my kids a bath and read them a bedtime story so I won't complain. If you haven't contacted the foundation I would encourage you to do so. They can give you alot of info and a list of treating doctors in your area.Kelly in Dallas where the sun is shining!
Re: Botox-B
Hi Kelly, thanks for taking the time to write. I originally thought this disease was part of growing "old". I am fortunate in that I have no physical demands on me. Even though my husband has cancer, he is actually well and gets around very well. He takes meds and naps when necessary, but he is my strength. We accompany each other to our respective medical appointments. I know I can't take the stress of a job and I am not driving presently. I hope to be able to drive by the time we go North this summer to visit our Kids. The acupuncture and herbs are helping a lot. Some days I am able to keep my eyes open for pretty long stretches. Excitement can still cause them to close. I am learning to rest between tasks and it helps. I have always been able to keep busy, but now I must learn to keep not busy. I have requested the member packet and look forward to receiving it. My brother and his family live near Dallas ... Terrell. He is a mail carrier.
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