NEW & FRUSTRATED


Posted by salserm , Dec 16,2001,23:12   Archive
I RECENTLY WENT FOR MY SECOND ROUND OF BOTOX SHOTS AT WVU EYE INSTITUTE.
I RECEIVED A DOSAGE OF 7.5 WHATEVER THAT IS. MY DR. QUITE FRANKLY DOES NOT SEEM TO BELIEVE I HAVE A PROBLEM & BEFORE HE GAVE ME MY SHOTS HE SAID, YOU DO NOT APPEAR TO BE BLINKING & I JUST DONT LIKE TO GIVE SHOTS FOR NOTHING,BUT IF YOU THINK THEY WILL HELP OK & THEN DID NOT RESCHEDULE RETURN APPT. UNTIL I WENT BACK TO OFFICE & REQUESTED.
I HAVE BEEN TO SO MANY DR. & THEY ALL ACT LIKE IT IS DRY EYE OR ALL IN MY HEAD. I HAVE READ THE SYMPTOMS ON BB & TRULY BELIEVE THAT IT IS NOT IN MY HEAD. HOWEVER, SOCIAL SITUATIONS & STRESS DOES SEEM TO MAKE THINGS WORSE. I THINK ALL THAT RUNS THRU MY HEAD IS , AM I BLINKING & THEN I DO BLINK.
MY GOAL IS TO BE ABLE TO DRIVE AGAIN & MY DR. SAID THAT I SHOULD BUT FRANKLY THE LAST ROUND OF SHOTS HAVE NOT KICKED IN & IT HAS BEEN OVER 10 DAYS.I HATE TO CHANGE DR. AGAIN BECAUSE FRANKLY THEY ALL SEEM TO SAY GET OVER IT. IS THIS STANDARD PROCEDURE WHEN THE CONDITION MIGHT NOT BE AS BAD WHEN AT DR. OFFICE?



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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Virginia , Dec 17,2001,00:01 Top of Thread Archive
It's not unusual for your symptoms to subside while seeing your doctor. It has happened to most of us at one time or another. You can try making a video tape of your eyes at their worst for the doctor. I did that and sent it to him prior to my appointment. Doctors who treat many BEB patients should be familiar with this situation. I understand you not wanting to change doctors, but you need one that will take you seriously. There are good doctors out there, it just sometimes takes a while to find one. You might want to contact the BEBRF office in Beaumont or your area rep. for the names of doctors in your area who treat BEB. Sorry this has been so frustrating for you, but we understand.

Virginia in AL




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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by kathy , Dec 17,2001,05:24 Top of Thread Archive
sometimes it can take up to 3 weeks for botox to fully start working, altho it's usually less time. hope this helps and like virginia said , you need a more knowledgeable doctor!



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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- kathy
Posted by Ann Doyle , Dec 17,2001,19:05 Top of Thread Archive
I still think the quality of Botox on rare occasions is useless. I had 3 wonderful experiences with 'Botox and then the 4th one never kicked in never felt any difference. In fact it kept getting worse everyday just like the months before I had my first botox. My eyes were closed for 8-10 weeks. It was terrible.
Last week I had my shots and the next day I was better just like all the other times.
I don't think it is always the doctor. I asked artane and they said they always kept track of how frozen it was. I was more interested in the strength of it. Ann Doyle

--modified by Ann Doyle at Mon, Dec 17, 2001, 19:06:35




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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Ruth D. Barth , Dec 17,2001,10:17 Top of Thread Archive
I understand how you feel because my symptoms are not typical either.
But if you already have been diagnosed at the WVU Eye Institute how can they doubt you.



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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Carol Brown , Dec 17,2001,15:41 Top of Thread Archive
Believe me, you are not alone in your frustrations. I went for 3-4 years with docs telling me I had dry eyes. I was about ready to scream. I finally found an eye doctor who told me for certain I had blepherospasms. I tell you, I could have kissed him. He also told me I needed to be diagnosed by a neoroligist, which I did. This was several years ago. I think at times this problem is very hard to diagnose as not everybody has quite the same degree of symptons. If you have not been to a neuroligist, I would suggest you go.

I know how hard all this is. I even had people, including my husband, think I needed a physciatrist. How about that? You have my symphathy and I wish you good luck.

Carol Brown in Naselle, WA where we have been having one storm right after another here.




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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Rita Molnar , Dec 17,2001,21:25 Top of Thread Archive
One of the Neurologists I went to before I knew what BEB was, told me that if I didn't like blinking my eyes and squinting, then I should stop doing it!!! Every time I think of this fine doctor, I wish for him FLEAS IN HIS ARMPITS..... One of the problems with BEB (I also have Meige) is that you might not display symptoms while in the doctor's office. If he doesn't see them, he doesn't want to diagnose.

It's real important that he understands what you are experiencing. With that thought, let me share with you what I finally did:

I was desparate for a diagnosis, and I was afraid that the doctor wouldn't see my symptoms like all the other times. I didn't want to be misunderstood again, and, I wanted to make sure I didn't forget anything when I got there, so I took along a letter describing EVERY symptom and concern. I also wrote a dated history for him. He read it at my appointment, was moved by it, and took an extra long time with me. Because he was patient, the symptoms finally appeared. He saw them, and diagnosed them immediately.

The idea of writing a letter might sound silly to some people, but believe me, after MANY years of looking for help, this seemed to be the only thing that worked for me.

If you think that this might help you, and you'd like a copy of the letter to my doctor, e-mail me and I'd be glad to share.

Best wishes, and hang in there...... Rita (New Jersey)




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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- Rita Molnar
Posted by salserm , Dec 17,2001,21:42 Top of Thread Archive
THANK YOU RITA & EVERYONE ELSE FOR YOUR ADVISE.
I THINK I WILL KEEP A LOG OF MY SYMPTOMS LIKE YOU SUGGESTED, RITA.



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : NEW & FRUSTRATED --- salserm
Posted by kathy , Dec 18,2001,06:40 Top of Thread Archive
i am really starting to wonder about the hesitancy of many of the doctors that have been described on this bb in diagnosing BEB? are they becoming alarmed at the increasing numbers of us that have this disorder and refusing to admit it or what?



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- kathy
Posted by Lynn Yarbrough , Dec 18,2001,16:38 Top of Thread Archive
I believe it is the case that there are nearly as many neurologists in this country as there are BEB patients. Blephros are at least rare enough that I know general practitioners who have NEVER seen an actual case of BEB; also, even those who have seen a case may not have diagnosed it correctly. Couple these facts with the potency of botulinum toxin and you have a strong basis for hesitancy even though Botox has been in the field for a dozen years now.

I think we still have a long way to go in terms of awakening the med profession to our needs and peculiar problems. This forum, as useful as it is, is still nearly invisible in the grand scheme of things, and Drs. still see a thousand cases of cancer and heart disease to every case of BEB. By now the major use of Botox is cosmetic; the proportion of Botox used for BEB treatment is reducing every year.

We need to be noisier about our case. We need to bang the drum about BEB and other dystonias, make speeches to organizations sympathetic to the sight-impaired, make ourselves increasingly visible even as our sight becomes worse. I personally welcome suggestions as to whom to contact to increase my own effectiveness. Unlike many Blefros, I can travel reasonable distances (e.g. So. Calif) to make a noise. Where should I do it?

--- Lynn




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Lynn Yarbrough
Posted by Rita Molnar , Dec 18,2001,23:48 Top of Thread Archive
Lynn,I know very little about the association, and I'm new to this whole BEB thing. But like so many others, I'm frustrated about the difficulties I had in getting a diagnosis for it, and I have some thoughts and experiences I'd like to share, perhaps in some small way to assist those of you who dedicate yourselves to finding some answers to our problems.

Although I'd had the condition (along with Meige)for over 20 years, I wasn't diagnosed, and NEVER EVEN HEARD THE WORD until January 2000.

My family doctor told me he'd never heard of the word "blepharospasm" until I was diagnosed and he received the report on me.

Any specialists I was ever referred to (neurologists, retinal specialists, opthalmologists, psychologists, psychiatrists) never uttered the word "blepharospasm" to me.

On the computer I knew only to look up the words "neurological disorders","tic" and "Tourettes" (which I suspected) and none listed or referred to the word "blepharospasm". On most websites where one might search for some description of symptoms, it is mostly ignored as a health condition, and there is a lack of cross referencing to it.

I found it somewhat amusing to learn that the SpellCheck used on this very BB doesn't even recognize the word "blepharospasm".

The cross-referencing "key" seems to be in "dystonia"... but I wonder how many people know to look there.

The word "blepharospasm" will hardly become a household word ever, since it is a relatively rare condition and certainly not life-threatening. But maybe there are some things which can be done to make it a bit more recognizable as a viable neurological condition.

One thought is to link the Blepharospasm site with neurological disorder, or with other health sites on the internet. Another might be some type of mail campaign to "educate" general practitioners (as the first contacts) to the symptoms. Has anyone considered creation of a short video displaying the symptoms, etc of the condition? (could be distributed for use in doctor's offices on their vcr's) Since it is a condition faced predominantly by people over 40, has anyone thought of AARP as a good source for distributing information. Through an article in their mag????? How about a speakers' bureau comprised of blephros from different parts of the country to speak to Senior Groups (they're always looking for guest speakers at their meetings).

If I think of anything else, I'll pass it on, if you don't mind. In the meantime, thanks for all your efforts and those of the other people in the association who spend so much of their time helping this cause.

Rita Molnar (in New Jersey)




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Rita Molnar
Posted by kathy , Dec 19,2001,05:49 Top of Thread Archive
great ideas , rita!!



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Rita Molnar
Posted by Lynn Yarbrough , Dec 19,2001,20:46 Top of Thread Archive
I believe there are a few videos showing the spasms in action, coupled with descriptions of the symptoms, and they may be available from the BEBRF -- I've never asked.

Speaking of frustrations, just in the last few weeks I have noticed a deterioration in my typing skills. You wouldn't believe the first draft of this paragraph. At least eight errors.

--- Lynn




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Lynn Yarbrough
Posted by Lynn Yarbrough , Dec 20,2001,18:04 Top of Thread Archive
So, after all that retyping -- I discover this morning that I was in the midst of a mini-stroke. (Two more typos in THAT paragraph!) Well, no need to let that slow me down. Well, yes, there is, if I want anyone to understand me. :-)

--- Lynn




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Re: NEW & FRUSTRATED/Please be okay again, Lynn

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Lynn Yarbrough
Posted by Sally - in - Idaho , Dec 22,2001,13:34 Top of Thread Archive
Lynn ... I hope you are doing okay now. I had one of those things just before being diagnosed with BEBand after my diagnosis I wondered if it had actually been part of BEB/Meige instead. But they had already put me on a blood thinner and wouldn't change that.

Slow down, take good care of yourself and happy holidays to you and your family.

Sally in sunny, beautiful, nippy to the nose North Idaho




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Lynn Yarbrough
Posted by kathy , Dec 19,2001,05:46 Top of Thread Archive
thanks for your insights on this, but i still think there are other reasons why some doctors refuse to recognize what is obviously a rare but important problem. i have banged my own drum in almost every way i can , informing those in my own narrow world( because i can't drive). kepp going on this Lynn!



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??/lynn

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Lynn Yarbrough
Posted by kathy , Dec 19,2001,06:52 Top of Thread Archive
Lynn, there MUST be some sort of central organization for rare diseases, non-contagious unit. maybe you could go directly to the top! you could sign on as some sort of chairperson.



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- kathy
Posted by mary ledbetter (MARY LEDBETTER,mary ledbetter), Dec 18,2001,20:33 Top of Thread Archive
I agree with Kathy and Lynn about Dr. I had an idea back a way. Under Botox, I stated about a T.V. show that talked about the good of botox in medicine but got no response. I ask the show to look into another use for botox in Blepharospasm. I thought if more request came in this news show they might give a piece on Blepharospasm.

In Seattle where it is still raining.




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- mary ledbetter
Posted by kathy , Dec 19,2001,05:52 Top of Thread Archive
maybe you could follow this up, mary. that's another good idea.



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- kathy
Posted by Ann Doyle , Dec 19,2001,09:23 Top of Thread Archive
I think most doctors are too busy to read or get on the internet. There are just so many new diseases now. They can't keep up that's why we have to do a lot of the work ourselves.
Our newspaper said that 30% of the people going to the doctor today have a computer printout. I know I usually do.
My GP listens to me and I'll bet he knows more about Bleph than any doctor withing 100 mile radius. MY real Botox, Bleph doctor is 3 hours away. Ann Doyle



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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- mary ledbetter
Posted by Sally - in - Idaho , Dec 19,2001,23:06 Top of Thread Archive
I don't remember which channel you said this was. If it happened to be KING, that one is related to KREM in Spokane, as is Northwest Cable News. If we could get that group interested, it would be fairly wide coverage. Good luck. I'll help if I can.

Sally in North Idaho where it's a foggy night.




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Re: NEW & FRUSTRATED/why are some doctors so hesitant??

Re : Re: NEW & FRUSTRATED/why are some doctors so hesitant?? --- Sally - in - Idaho
Posted by mary ledbetter (MARY LEDBETTER,mary ledbetter), Dec 21,2001,20:32 Top of Thread Archive
it was King 5 here in Seattle And it was Jean Enderson. I was in hope that several people would e-mail her . Here you can on in to King5.com. Then in to comment and state you you thought on botox use. I suggested they look into the use in blepharospasm. For their information to go to Blepharospasm.org.
So Sally if you can get people to comment they might do some good. Iam going to Seattle for botox and it is a 15 minute visit but he does his best to answer question.
I found a DR closer and if my insurance will cover , I would go. I really live in Bothell, out side of Seattle and must get a ride down town and most of friends are older. I am 68 and do drive to store on good days.
Where in Idaho do you live?
My email is Maryled@msn.com



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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Ruth D. Barth , Dec 19,2001,07:35 Top of Thread Archive
What do you do when you finally find a doctor that specializes in this and the office tells you that they only accept referrals from your own doctor? I was told this is a doctor-to-doctor consultation and noone is self-referred. What if your doctor does not believe in this disease?
Is there any way around this?



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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- Ruth D. Barth
Posted by Ann Doyle , Dec 19,2001,09:31 Top of Thread Archive
Just ask your doctor for a referrel to the doctor of your choice. Don't worry about his ego, I'm sure he has plenty. I Told my doctor I was going to a certain Dr. for surgery for hemispasm when he said MVD didn't work. Wouldn't you know in my case, it didn't. DRAT Ann Doyle



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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- Ann Doyle
Posted by Ruth D. Barth , Dec 19,2001,18:50 Top of Thread Archive
Ann,
I thought that a referral was more than sending your records. I thought that the referring doctor would have to believe that you have the disease in order to refer you. Thanks for your input.
Ruth in Connecticut.



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Re: NEW & FRUSTRATED/ruth

Re : Re: NEW & FRUSTRATED --- Ruth D. Barth
Posted by kathy , Dec 20,2001,04:55 Top of Thread Archive
ruth, there are way too many of us with pain and very bad spasms to not believe in this disorder. write or e-mail the BEBRF for some of their blue books and give one of these to your disbelieving doctor. this should definitely help.



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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- Ruth D. Barth
Posted by Ann Doyle , Dec 20,2001,15:35 Top of Thread Archive
You're right. She needs another doctor for a second opinion. Ann Doyle



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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Moderator-JB , Dec 23,2001,01:18 Top of Thread Archive
A dosage of 7.5 units is like a drop of water in the ocean .... no one is going to notice anything from it.

A wise old saying goes ... he who has not walked in my shoes ... has no idea what the heck is going on. Well, dear ... we each have walked in your shoes and the doctor you are referring to obviously is walking on Pluto.

Print out each of the Blepharospasm Main Pages when going to another doctor - I'd suggest a neuro-op or a movement disorder specialist. If you have or can borrow a camcorder do and when by yourself, record your face while it is spazzing. You will have the proof and the information to back it up.

A doctor is supposedly providing a service for which you are paying a good price for. Get your money's worth!

Judy Blackman
blkmn36@earthlink.net
Moderator




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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by June in Toronto (June Floyd,June in Toronto), Dec 23,2001,04:43 Top of Thread Archive
Hi there, sorry I didn't post back to you straight away - just got back from travelling and read Lynn's post that he had a mini-stroke and that really worried me. I haven't read your name before, so if you are new to the bulletin board, welcome.

You seem to need another doctor, as suggested by others. You also need to know the amount of units of botox per injection, and how many injections you are receiving in total and where they are placed. I receive 90 units between the two eyes - I have to wait 3-6 weeks after the injections for the side effects to stop, then I am able to drive for a couple of months. We are all different though. I, too, get stressed out with social occasions where there are lots of people, noise and lights. Also, my doctor, seems to realise that when I see him I look better than I usually do - its a quirk of the disease!

Please continue to post and let us know how you are doing. Take care.

June in Toronto who is up at 5 am - not sure what time zone I am on - it can't be Vancouver/Seattle as it would be 3am there!




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Re: NEW & FRUSTRATED

Re : NEW & FRUSTRATED --- salserm
Posted by Nancy Pfaff , Jan 01,2002,14:04 Top of Thread Archive
They thought my problem was all in my head also. I hoped it was. It has been 4 years exactly since symptoms started. After 7 doctors including acupuncture I was diagnosed with BEB/Meige. I receive 75units of botox about every 3 months. When I first started having symptoms I was diagnosed with dry eyes and told by my first Doctor it didn't warrant me being off of work however I couldn't keep my eyes open and I couldn't drive. She put me off of work for a week - wasn't that nice. Then I went to a neurologist who tested me for Myasnia gravis. Said that's what I had and started my on steroids- turned out I didn't have Myasnia Gravis. He sent me to another Neurologist in LA where I was officially diagnosed with BEB/Meige. The botox started after that. I went on family leave from my work for 3 months. I didn't drive a car for 8 months. So when I was able to go back to work my husband drove me. Then a miracle happened- I wasn't cured but my botox was working better and I now drive and work again. I also take 1 mg of Ativan twice a day. My life is back to normal. I still have downhill days but I get my shots then I'm ok again. One time I went 5 months before getting shots. Don't let them tell you its all in your head. Write to the Foundation and get a package from them to take to your Doctors. Then they will be more compassionate. Take Care Happy New Year and you will get back to normal soon. The botox takes time to kick in plus the Doctor needs to experiment with the sites and the dosage. Nancy

--modified by Nancy Pfaff at Tue, Jan 01, 2002, 14:06:02




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Re: NEW & FRUSTRATED

Re : Re: NEW & FRUSTRATED --- Nancy Pfaff
Posted by salserm , Jan 01,2002,19:47 Top of Thread Archive
THANK YOU FOR YOUR REPLY & ADVICE. IS ATIVAN AN OVER THE COUNTER DRUG OR DO I NEED A PRESCRIPION.
GLAD TO HEAR YOU YOU ARE ABLE TO WORK & DRIVE AGAIN.



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Re: NEW & FRUSTRATED/salserm

Re : Re: NEW & FRUSTRATED --- salserm
Posted by kathy , Jan 04,2002,06:53 Top of Thread Archive
salserm, ativan is a prescription medication used to treat muscle spasms as it is a muscle relaxant. it is also used to treat people in the hospital for when they go into shock. lorezapam is the generic form of ativan. i took lorezapam for a while and it stopped working , so i had to switch to the ativan. it was suggested that maybe i was allergic to the filler in the lorezapam.



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