Re: What do you think?
Hi Dianne. This may sound harsh but if you have a doctor telling you that your only other option at this point is surgery, you should find a new doctor. He apparently is not very experienced with treating BEB patients or is just way behind the times or is a surgeon or has a surgeon in his group that he would like to refer you to.
By all means, find a neurologist that is also a movement disorder specialist. Call or email the BEBRF and see if they can give you any names of docs in your area. You need to see someone else.
Surgery is a permanent treatment option and you are way too early into this to consider surgery.
If you just got a full bottle of BOTOX which is 100 units, there is no way that you should get Myobloc (I assume that is what you mean by BOTOX B) in two weeks.
BOTOX lasts much longer than two weeks or a few days. It either isn't working for you or you are not being given the injections in the right places. From what I make out of your post, it doesn't appear that your doctor or the specialist knows very much about this. Run, my dear and find another doctor. Preferably a neurologist. Call around and make sure that the new doctor is a movement disorder specialist and that he treats more than one or two BEB patients.
Keep us posted on how your eyes do over the next week or so.
Tell your employers that you can not make a decision at this point. They also legally can't fire you and have to make accomadations for you in the workplace. You don't need their pressure right now.Shirley in Arkansas who is concerned about you.
Re: What do you think?
Hi Dianne,Shirley has given you good advice about seeking the opinion of another doctor. With your blood pressure continually going upward, it doesn't seem to me that this is the greatest time to consider surgery. Wait until things ease up in your life. You have so many concerns right now and don't need another major happening to stress you out. As for your job, don't let them pressure you. Take your time to sound out your choices and make the best one for you and your family. You say that you do quite well during the morning. Is there any possibility of you going part-time in your job? We care what is happening to you. Keep us up on the latest and don't be afraid to ask questions and mull over your ideas. Sally in North Idaho
Re: What do you think?
I'll be short.1) See a neurologist
2) Stop driving, now. Yes, I know that's a lot to ask of an active person, but BEB will cause you to injure someone, and that will REALLY screw up your life.
3) Get your stress level under control. It sounds like you are coming apart at the seams right now. Find someone to help you learn stress management methods, and USE them. Stay cool and have fun! --- Lynn
Re: What do you think?
Dear Dianne, its such a stressful time for you, but you've been given good advice by others that posted back to you. You do need to find another doctor, but is it also posible tht you could take some vacation time right now, or short-term leave, or as Sally suggested, go on part-time work? You really need to get that stress level down so that you can make some better decisions for yourself. Best wishes to you. We careJune in Toronto (beb/meige)
Re: What do you think?
When I faced this same delimma, I kept changing doctors until I found one who would listen and work with me. In the meantime, I took 30 days of family/medical leave, because I couldn't qualify for Short Term Disability at work until I had been off work for 30 days. I had 90 days of STD and then applied for Long Term Disability and got it before the 90 days expired. Then I had to file for Social Security Disability which I got in 60 days. (Everybody does because LTD is really a loan until you get SSD started, except for any amount that gives you the percentage of your income stated in your LTD policy. In other words SSD is based on earnings over a certain period and if it is less than what your work disability promises, the LTD will make up the difference to give you that amount.) I say all this to let you know when you do get SSD, you have to have been out of work for 5 months to start getting it. Mine came out just right so I was never without an income and that was an issue for me. Also that time not working gave me a chance to process what life with BEB was like without the stress of a job I could no longer do. The stress of BEB is plenty to deal with when you are trying to find the right doctor and the right treatment that works best for you. That's what worked for me and I've never regretted the decision. Others do it differently, but I found having the LTD approved first helped get the SSD faster. I also had learned some lessons from a friend who kept trying to work, even changing jobs that were more flexible with hours, but lost their disability insurance when they went part time and ended up not getting approval for SSD for 18 months and had no income except welfare during that time. She had to move in with her parents for awhile. She probably could have sued her last part time employer when he denied her unemployment compensation, but she didn't have the emotional energy to do it after losing one appeal. It was a large corporation who had a lot of money, time and lawyers to fight her and she just didn't have the energy or money to fight anymore. It all finally worked out, but I learned a lot from her experience.
Re: What do you think?/Diane
all of the above is very good advice. If you can eliminate some of the stress , maybe your neck and shoulder spasms might improve. I get a lot of tension there also. You can try various exercises to relax them, such as slowly rolling your shoulders forward and then backwards. Also hot tubs or warm baths or showers on this area helps. If none of this works , a muscle relaxant might help stop this cycle of pain. are you taking any meds now?
maybe even a heating pad on these muscles could help or having someone give you a massage.
--modified by Kathy in Atlanta at Fri, Apr 26, 2002, 10:10:46
Re: What do you think?
Dianne, you are really having an awful time. There is no better place to vent than here on the BEB. Frustration is our specialty.As you have already been advised .... run to get better medical attention. I have been on Botox for almost 2 years and the most I ever received was 60 units. It took many tries for the Neurologist to find the correct places to inject. I now receive 40 units in 8 places (5 units each) and can keep my eyes open almost all the time. Still have a problem outside in the sunlight. My spasms are triggered by STRESS and I receive medication from my GP to control my reactions. I take 150 mg of Effexor daily and it works for me. So, don't give up and don't be too quick to go the surgery route. If your job is a source of stress, do what ya gotta do to make yourself better. Hope this has been supportive. Be well, and don't forget to smile.
Marie in sunny Florida who gets lots of family support.
Re: What do you think?
Dianne, Please e-mail me at ajwhitt@hpe.infi.net. I have something to tell you about this doctor and I don't want to get in trouble by posting on the BB. You definately need to see another doctor. Write to the Foundations for doctors in your area. Joyce in NC
Re: What do you think?
Joyce,
I have tried to e=mail you twice and each time this confounded computer tells me I have an error. Please send me your e=mail address again or e-mail me at dkjbeav_2000@Yahoo.com . Thanhs again. I don't know what has happened to my typing but I;m ready to throw this thing out the back door!
Dianne Beavers from NC
Re: What do you think?
Dianne,I also agree that you should search for a nuerologist who specializes in motion disorders. I think you would have more luck with the Botox shots. And having to go back in 2 weeks for more Botox just seems wrong to me. Botox should last longer than that.
I just went through the work/not work problem myself. I decided to stop working, went on STD now LTD and I am waiting to hear about SSA. Its such a hard decision, but giving myself a rest, and learning to deal with BEB without outside pressures certainly helped. I actually feel healthier (aside from the eyes) now then a year ago. And I have begun to do what I truely love, painting. The corporate door closed and artsy girl door opened. Artsy girl is more fun to be around.
I have problems with my neck and shoulders too. That area is known for holding stress. When I had my first Botox shots for pain in my face, My neck and shoulders, and headaches got so bad, I stayed in bed for 3 days. I don't know if you drink a lot of water, but try to drink as much as possible to wash out toxins.
Lastly, take care of that blood pressure, that can cause more damage to your overall health then BEB. Take time for yourself, pamper yourself, take a bubble bath, light some candles, smother yourself in some sweet smelling lotion, anything that makes YOU feel good.
Take care and hang in there. We are all here for you.
Denise
Re: What do you think?/school workers
Gosh! I don't know how you cope!
I agree with everyone here...you must get your blood pressure down. How you do that is a problem I know. I lost a little weight and it floated down by itself when the doc was worried about mine. Exercise will also help blood pressure and stress and weight loss.
I also am concerned about how you are getting your Botox. From everything I have read about Botox in the last few months on the web, not just here, i would agree that you are not getting it the way considered to be correct at the moment. That's not to say it is wrong, but perhaps you could read up more about it yourself on the webto inform or advise your doctor of current thinkings on it. Or change your doctor .....I only see an Opthalmologist for my eyes and treatment as he is the expert here on it. My doc hd never heard of it, and i am teaching him about it! So don't be a guinea pig if you don't have to.
As stress is also a factor you must ask yourself if living on less money was at all possible. If it will just cause more stress then you could maybe see someone like an occupational health advisor (Which we have in the UK) who will make arrangements for your job to change so that you CAN continue to work. (at least that is the law over here. Is it in the US?) it may include shorter hours, or doing admin work instead of teaching where you are in the front line, for example.
What is your gut reaction to leaving work? When the nurse suggested putting me forward for early retirement I felt an immediate surge of relief. I am definitely enjoying not hving to go to work, but find I am even more busy! How I found time to go to work i do not know. But depending on your circumstance you may actually find it just as stressful not to be working. But you may find the time to do things that you get more joy doing, and I think we should definitely go for that if it is at all possible. If you only worked mornings then you could have the time (and the money!)for a massage of your shoulders in the afternoons maybe, or to just have time to relax if you need to.
A positive sign though for you is that you can drive again..Is it my imagination or are there are a lot of people writing in here who work/ed in a school?? I do/did. (Not got my appointment with the doctor who will decide wheteher I get early retirement yet)
Pippa
Re: What do you think?/school workers
Work/ed in a school ... not your imagination. I was a school librarian, Shirley was a school nurse, and go on from there. I can't recall all the others but there are several. When I first came to this BB about two years ago (I think, time flies) there were two teachers from the east coast who were posting regularly, but they no longer do. I'm sure there will be others who answer your question.Sally in North Idaho who is relieved to not be working now.
Relieved to not be working ...
I second your motion with regard to feeling the relief of not working. No matter what your age when this disorder attacks, your work career suffers. You certainly find yourself in a constant muddle of stress. Your employer, if he is smart, must walk carefully amongst the legal lines in his handlings of you, your position and the deterioration of your job performance.The Americans with Disibilities Act is a protection for us all. So far as knowing when or if to quit working, that time becomes glaringly apparant and forces itself upon most of us. Take care of yourself and read everything you can. Judy
Re: Relieved to not be working ...
I’m curious how the ADA can help my situation, there are many jobs I can still do at my employer but because its a union shop, I can only get the jobs I have seniority for. (I’m on the bottom third) Where can I get more info on this?Ken, Deep in the Heart of Texas
ADA ...
Ken:Your employer must provide a job that you are able to do if it is possible. 1. Start and maintain a paper trail. Tell your superiors the exact nature of your disorder. Once they have been notified of the severity of it, they may not lay you off due to a declining job performance. 2. Do not quit your job. (This takes into consideration that you do have Short and Long Term Disibility available from your employer. 3. Keep good notes, day by day if necessary. Here's a link to their site. http://www.adata.org/ Good luck, Judy Blackman
blkmn36@earthlink.net
HOLY COW, ask and yee shall.......
I ask a question to the Moderator and BAM! the Supreme Court comes out with a decision that mirrors my exact situation, just change the names. I need to track down the opinions of the judges somewhere. Thanks Judy for your info. Ken http://www.usatoday.com/news/washdc/2002/04/29/scotus-disabled-seniority.htm
Related link: http://www.usatoday.com/news/washdc/2002/04/29/scotus-disabled-seniority.htm
Re: HOLY COW, ask and yee shall.......
Great Ken. Hope you can figure this out to your advantage at work.June in Toronto
Re: HOLY COW, ask and yee shall.......
Hi Ken you might be making lead ways for others . I'm a BEB and have been out from school -library-clerk for two months. And My principal is very concern about my health . He had the never to ask if he needed to open up my position for the next shool year. I told him that I was planing on going back to finish up the school year. What does that tell you. I've alwasys done two jobs because I'm a single parent and want to provide for my kids. I had never been sick and had never heard of such and illness as blepharospasm. I'm still trying to beat the odds but their is a long term illness ahead of me.
Take Care
Irene
Re: What do you think?/school workers
I worked as support staff in the university environment for over 20 years.June in Toronto (beb/meige)
Re: What do you think?
Dianne try dancing once a week. Great for stress We do it once a week and when we come home my eyes are open, and usually the next day is a good one.
Re: What do you think?
Dianne, I remember some of your previous posts and how similar your symptoms were to mine. When you mentioned the hoarse throat it really got me. I get that also after bad days. I’m trying to figure out how it’s related, but I know it is now after reading this board. Does your neck tighten up when you drive? My whole neck and jaw spasm up when I drive, along with opening my mouth. I know Lynn says stop driving and all that but I’m not ready to throw in the towel..yet. Just get the hell outta my way! Sorry Lynn) I’ve got 2 doctors lined up in the next 2 weeks, one of them is Jankovic in Houston. I made a tape for them to see as well. I agree you may want to get another doc also. I got a bum one from the list here but that’s how it goes. Keep movin on. My 3 and 6 year olds exacerbate the condition for me also, I feel for ya. If I have to, I just put in a movie, give em a snack and tell them to BE QUITE! for 10 minutes.If you can, sign up for all the STD and LTD you’re able to. You’ll probably have to wait a year or so before your eligible. I also signed up for an employee assistance program that subsidizes your income, just in case the towel comes out. You might want to ask around. Get the FMLA filled out if you have not already. Send me your email and Ill keep you posted on what these next few doctors say. Just click on my name above to reach me. Good luck
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