New kid


Posted by Andrew Nagle , Sep 20,2001,15:10   Archive
Hello to everyone over the pond. I live in Sheffield, England and was diagnosed BEB last week. Had my first BOTOX shots yesterday but no effect yet.
I cannot explain what a relief it is to know that other people can understand what I have been going through for the past year,thought I was going crazy.
Reading through recent posts it is interesting to compare notes:

Insurance will not pay out here in UK as treatment is temporary and not a cure. Any suggestions?

My shots cost pounds 240 sterling for 1x500g DYSPORT ( I think that is what the bill says ) approx 370 US Dollars. and the consultant charged approx 300 pounds (460 Dollars )to inflict pain.

It is obvious that most people contributing to this site are in much worse condition than I am. Although I sometimes find it tough to get things done I can still drive on some days and work just takes a little bit longer. Luckily the sun don't shine too much over here but just spent two weeks in the South of France which was hot, sunny and horrendous for my eyes.I have virtually given up riding my motorbike tho'

I will read your future posts with interest and keep you up to date with my progress, nothing like this in UK.

Deep joy
Andrew




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Sally - in - Idaho , Sep 20,2001,18:26 Top of Thread Archive
Welcome, Andrew! I'm happy to see that you found this site so quickly following your diagnosis. There is a lot of help to be found here, plus just reassurance that you're not going crazy.

We've had others post from the UK and I believe they were having their Botox paid by insurance?????? (Are any of you out there looking in who can help Andrew out?)

I hope you get some answers soon. Anyway, come back here often with any of your questions or suggestions. Bring a sense of humor as that will get you through many blunders in life. Tell us more about yourself as you feel comfortable doing.

Sally in North Idaho




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Christel-California , Sep 20,2001,19:57 Top of Thread Archive
Welcome Andrew. I was quite shocked to read that your insurance won't pay for the treatment, but as Sally said, I do believe that others from the U.K. have not had that problem and I hope that someone pops up who is able to help you with this.
Hope you have good results with the Botox.

Christel in Ca.




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Dee in OR , Sep 20,2001,23:49 Top of Thread Archive
Hi Andrew,

Welcome to the BEB bulletin board. I don't know anything about insurance in your country but have you tried the botox web site at www.botox.com? Then click on "Consumer Connection". They should be able to help you in some way. Good luck and please stick around We love hearing from you folks across the pond!

Dee in Oregon Related link: http://www.botox.com




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Re: New kid

Re : Re: New kid --- Dee in OR
Posted by Andrew Nagle , Sep 21,2001,03:54 Top of Thread Archive
Dee, thanks for the suggestion and link to Botox site. Yes I have already looked at this and found it offers a reimburse system but only for US users. Allergan have a large UK/European network ( all my contact lense solutions were made by them ) so I will persue it from this end.

Thanks to everyone else for messages and support.

Deep joy
Andrew




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Re: We don't let Alan near the pond

Re : Re: New kid --- Dee in OR
Posted by Sally - in - Idaho , Sep 21,2001,14:33 Top of Thread Archive
Yes, Andrew, we do love hearing from folks across the big pond. We just don't let Alan too near, as he is likely to fall in. Haven't heard of any misadventures into lily ponds or swimming pools lately, so perhaps he is not living as dangerously.

Good luck with your insurance difficulties.

Sally in North Idaho were it was supposed to be near 80 degrees today, but my fingers are like ice. Just turned on the thermostat in the living room. Of course, it doesn't help that I still feel numb and cold inside from all the turmoil in our nation and the world.




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by June in Toronto (June Floyd,June in Toronto), Sep 21,2001,15:54 Top of Thread Archive
Hi Andrew and welcome to the bb. Sorry you have been diagnosed with beb and hope you get some help with the cost of botox injections.

I'm originally from London (came here in 1960) and in 1995 (when we were there for 3 months) I diagnosed my own beb from an article I read in a women's magazine. I went to the London Dystonia clinic and received all printed information and finally got it diagnosed when I returned to Toronto.

I used to ride a Triumph 350 twin motorbike - the good old days - it would be worth a lot of money now if I'd kept hold of it! How are Sheffield United doing - Tottenham Hotspurs was my home team?

Good luck to you. June in Toronto

--modified by June in Toronto at Fri, Sep 21, 2001, 15:58:13




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by mel , Sep 21,2001,17:05 Top of Thread Archive
Hi Andrew,

As a fellow Brit, I would like to write to you about my experience of Botox and Blepharospasm.

Just before Christmas last year I went to my GP (at my wits end) and explained that I had been blinking and frowning uncontrollably for many, many years. He immediately referred me to a neurologist at the local hospital. I had to wait for four months, but eventually I went along to the appointment. The doctor said he would give me muscle relaxants. I wasn't happy with this, and I asked for Botox. (Only because I had done my research and read the BB. Thank you everyone!)
He made an appointment for me the next day and said he'd give me the pills. When I turned up he said he'd decided to give me Botox!!!!!

It has changed my life. It's given me a life, the life I wanted! And it didn't cost a penny.

If you don't mind the initial wait, I suggest you get yourself on an NHS waiting list via your GP, and enjoy your life...for FREE!

You were right about the gloomy weather. Enjoy your motorbikes,
Mel.




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Re: New kid

Re : Re: New kid --- mel
Posted by Andrew Nagle , Sep 22,2001,10:32 Top of Thread Archive
Mel, thanks for advice. I have made an appointment with my GP but understand the wait for treatment can be several months.
Glad to hear that Botox was right for you. Only four days since my first jabs (insurance agreed to pay for this one as a good will gesture)and I can certainly feel an effect but symptoms still persist in a milder form.
How long did it take for you to notice a difference and was it a complete disappearance of symptoms?

Here's hoping.

Andrew




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Re: New kid

Re : Re: New kid --- Andrew Nagle
Posted by mel , Sep 25,2001,16:27 Top of Thread Archive
Hi Andrew,

I'm so glad you have made the appointment with your GP. Even if you have to wait a while, at least you have got the ball rolling. Good luck with whatever follows.

I had two problems before I was treated with Botox. The first was blinking. This happened when I spoke, when I was tired, stressed or in my local supermarket! My eyes would just screw up involuntarily.

My second problem was frowning. I frowned most of the time. Particularly when I felt self conscious (and I always felt self-conscious, because of the frowning). This gave people the wrong idea about me and affected every part of my life.

The day after my Botox injections the frowning stopped, which was like a dream come true! I noticed the difference in people's reactions to me the day after too...

The blinking has lessened, but not stopped completely. I can't actually screw my eyelids up at all, but somehow the spasms still occur. But because they are less frequent, I worry about it less.

It sounds like you may have reacted in a similar way.

Please let me know how your treatment progresses and how long you have to wait for your appointment...hope it's not too long.

Mel.




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Re: New kid

Re : Re: New kid --- mel
Posted by Andrew Nagle , Sep 26,2001,09:21 Top of Thread Archive
Mel, thanks for the info. It does sound as if my reaction is similar to yours. Now seven days since jabs and symptoms are much less severe but still present. noticed my left eyelid drooping quite a lot. right side is OK. I have always suspected that only my left eye is affected but so difficult to tell as you always blink with both eyes. Interested to hear your thoughts on this.

Andrew




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Re: New kid

Re : Re: New kid --- Andrew Nagle
Posted by mel , Sep 28,2001,16:12 Top of Thread Archive
Hi Andrew,

I don't know if BEB can affect just one eye, but the drooping of an eyelid is very common. I found it worse after first injections. The whole left side of my face drooped last time, I think I might have looked like Quasimodo for a week or so!

The drooping doesn't last for long and I think the person affected feels like it looks worse than other people do. I don't tell friends about my condition (apart from the lovely people I've met on the BB) so I'm always on the lookout for clues that people have noticed the side effects of the treatment. I've become quite an expert in body language since this strange condition started to affect me.

Hope things are still going well for you and you are enjoying your Friday night. I love Fridays. Eastenders, Brookside, Absolutely Fabulous and a nice glass of wine...Heaven.

Mel.




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Re: New kid

Re : Re: New kid --- Andrew Nagle
Posted by Owen Taylor , Sep 25,2001,21:34 Top of Thread Archive
Andrew: Good luck with the treatments. I had problems my first couple months but am doing really well now. It took almost a month for the injections to become completely effective (but my third set of injections). I think everyone is different so the only point of this is to not give up hope. My doctor needed to try several combinations before getting it right. For what it is worth I have experienced a lot of light sensitivity since the injections. I've learned a lot about dealing with that problem in recent days...

I've also found that looking at my medical bills, while not as bad as yours, can cause excessive blinking, gasping for breath, and swearing...

Owen




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Re: New kid

Re : Re: New kid --- Owen Taylor
Posted by Andrew Nagle , Sep 26,2001,09:16 Top of Thread Archive
Owen, I also find that bright light is a factor. As you say this is manageable to some degree.
Know what you mean about the bills especially on top of Mr Visa and Mr Amex.

Stay cool Andrew




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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Delaine Inman , Sep 21,2001,22:38 Top of Thread Archive
Welcome Andrew. I hope Mel's advice will help you. If only "cures" are covered then not much would ever be covered. Most medications and procedures just treat symptoms and are not cures. Keep posting from across the pond and we will be waiting to hear from you with our fingers crossed for good luck.



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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Reny Wells , Oct 19,2001,18:01 Top of Thread Archive
Hi Andrew!! Hang in there!

I was diagnosed nearly two years ago, after exhibiting symptoms for about a year, and going from doctor to doctor with no luck. I'm sure some of the doctors thought I was just a crazy woman going through a mid-life crisis. I got to the point where my eyes were closed nearly all the time and I had to walk with a cane, much like a blind person would. I began to think I would lose my mind....or maybe that I already had!

I have BOTOX injections every three months now, just had my 5th series a couple of weeks ago. I've found they usually take two to three weeks to be effective for me, but they do stabilize my eyes enough that most of the time I'm able to drive short distances and work part time after that for 8 weeks or so before I'm house-bound again....and counting the days til my next injections. My life seems to be divided into three month intervals, with my activities planned around my treatments.

I believe the hardest thing for me to deal with is that nobody I know at work or socially has any knowledge of this condition, other than what I share with them....and even then, unless you experience it yourself, you can't begin to know the toll it can take on you physically and emotionally.

If you'd like a pen-pal....someone to share e-mails about Blepharospasm, and life in general, just let me know. I've included my e-mail address.

Best of luck.....and enjoy every moment to the fullest....Reny




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Re: New kid

Re : Re: New kid --- Reny Wells
Posted by MaryNY , Oct 19,2001,20:20 Top of Thread Archive
Reny-Welcome to the wonderful, informational, and exciting BB! (Well, sometimes). Why don't you do as I do - contact the BEB Foundation in Texas and ask them to send you some free brochures to hand out to people who don't know about BEB. I have educated many drs., even! Hope your shots continue to work OK for you. Mary



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Re: New kid

Re : New kid --- Andrew Nagle
Posted by Dee in OR , Oct 19,2001,20:24 Top of Thread Archive
Hey Andrew,

Welcome to the BEB BB. Guess what? You are going crazy! Stick with us and you'll see what I mean. Have you checked with Allergan, the makers of botox? They may be able to give you some ideas about reimbursement. Don't now if they just do the US or worldwide. But with all the people on this board, I would think they would have to start doing something worldwide. Anyway, glad you found us and keep us posted.

Dee in OR Related link: http://www.botox.com




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