What do we want from a doctor?


Posted by Delaine Inman , Nov 16,2001,15:52   Archive
I'm thinking of having a support group that is aimed at inviting as many doctors as possible and call it "What we want from a doctor". I would also have them say what they want from us. This is just such a frustrating disorder to have and to treat. I got the idea when I responded to a post that was it too much to ask for a doctor to recommend a patient go to a (BEB/Meige/Dystonia) support group, be given a brochure from the BEBRF (and sit and talk about it with you) and recommend the Bulletin Board as a source of support and education. Also encourage you to contact the foundation and get signed up for the newsletter and get a packet. Can you all give me some ideas as what you want from a doctor? I could write it as an article and see if BEBRF would put it in the newsletter. What do you think?

--modified by Delaine Inman at Fri, Nov 16, 2001, 15:54:25




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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by Dee in OR , Nov 16,2001,16:05 Top of Thread Archive
Delaine,

Great Idea. What I want from a doctor is someone who takes me seriously. Someone who treats me with respect, treats me like I have a brain and am using it. Someone who answers my questions HONESTLY, even if the answer is "I DON'T KNOW" but I will try and find out! Someone who doesn't laugh when I mention the BEB bulletin board and information that I have gotten from it. And someone who is truly interested in my well being and not just my checkbook! I don't think that is asking too much. :-)

Dee in OR




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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Dee in OR
Posted by Delaine Inman , Nov 16,2001,22:21 Top of Thread Archive
Well said. I copied the post and will do so for anyone else who wants to contribute. I think we could really make a difference if we can communicate this to doctors. Thanks.



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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by kathy , Nov 18,2001,05:19 Top of Thread Archive
my doctor pretty much does all of this already, i don't seem to have a communication problem with him. of course i think the bb unnerves him and i'm sure it does to a lot of doctors as it has been empthasized that we patients know alot more about beb than many of them do.



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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Nov 17,2001,06:44 Top of Thread Archive
That's a great idea, Delaine, good luck with it.

I get what I want from my neurologist - I know I'm very lucky. He is very knowledgeable about the disease, compassionate, caring, listens to me and, on the first visit, suggested I join the Dystonia support group (not Blepharospasm mind you, as they only meet once per year here in Toronto). He has attended meetings, given talks at our annual doctor's symposium, and been honoured more than once for the above by his patients. I wish everybody had such a good doctor - it sure helps to cope. He also writes, signs, fills out all those forms that are necessary for disability without charging a cent - unbelievable, almost, in this day and age!

June in Toronto who will be working at the church bazaar this morning and its going to be another mild day.




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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by coleen dennis , Nov 17,2001,10:38 Top of Thread Archive
Delaine,

This is a great idea as well as being very timely for me. I have found out from personal experience after only being diagnosed for about 9 months what NOT to have in the doctor(s) that are treating me.

I was referred by neuro-opth to the ocularplastic for surgery after only 2 sets of injections that went from 25 units to 33 per eye. Then the surgeon recommends surgery in December. I am going blindly without Botox since the set in July. Talked with a ocularplastic doctor at a conference in Phila at Wills Eye. He agrees with Dr. Anderson it is too soon for surgery. I decided to try going to him and postponed surgery for the time being. I tell the other two doctors I am going for a 2nd opinion and get documentation from them. In the memos, neuro doctor says he wants me to be optimized on Botox before a myectomy. Surgeon didn't pick up on that and put in his letter to the insurance company for surgery that 1st doctor feels that I did not have an "accurate response" to the toxin. Now insurance has denied surgery and it is pending to go to new doctor for Botox because of information from surgeon that insurance thinks says the Botox didn't work at all. I want the surgeon to rescind his statement about the failure of the botox so that I can go see this new doctor and receive my botox the same day as my consultation. I don't think that is asking too much. Do you?

I am hoping this new doctor at Wills Eye is honest, will listen to me, will not be offended if I want copies of documentation on my treatment, will give me written information on amounts of Botox and sites and above all take my future treatment into account when submitting anything to the insurance company.

Sorry for the venting, but sometimes you are struggling enough with this as it is and when both the medical community and insurance company are working against you.....extra stress we certainly do not need.

Coleen in Central PA, who is really frustrated and am not going to take it anymore. Shirley, here I come....LOL Thanking all of you who are sisters & brothers in advocating for ourselves and others.




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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- coleen dennis
Posted by Delaine Inman , Nov 17,2001,11:15 Top of Thread Archive
Go Girl, we are right behind you. Be a fiesty pit bulldog if you need to do that. Do whatever it takes. Be a pest. Write, call, be assertive. You deserve the best care. Maybe Dr. Anderson could put in a word in writing that it is too soon for surgery. He is one of the leading experts and what he says carries clout. Try letters to docs and insurance, but don't give up and don't settle for suffering or doing what you know isn't right for you. I've copied your post and I'll figure someway to include this in my article and meeting. Thanks and good luck. It is a full time job sometimes haggling with insurance companies and doctors, but so far my efforts have always paid off even though it is exhausting, frustrating and makes you just plain angry. Turn the anger into energy you can use in a positive way and know that others have changed minds and so can you. Your cheerleader when ever you need one. There are many of us here.



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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by kathy , Nov 18,2001,05:28 Top of Thread Archive
i think another Very important suggestion that i believe shirley made is that if at all possible, have the doctor or his nurse or some associate of his or her attend these conferences to keep up on the current information ad/or add his own insights to our disorder.



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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- coleen dennis
Posted by Moderator-JB , Nov 18,2001,16:05 Top of Thread Archive
Coleen:

Request a copy of the letter any doctor is sending to the insurance/or SS on you. If it is incorrect (or stupid) request a rewrite. If they won't do it, plant yourself on their doorstep until you get a positive response.

Once, some time ago, a retailer refused to make good on a failed product repair that I'd paid for. When I refused his refusal, he said there was nothing I could do about it. WRONG ANSWER! I very simply told him that I would stand in front of his establishment and tell all of his customers about his actions.

Bad Press works on doctors too. They don't want their clients knowing that they screwed up.

Stand up for yourself,

Judy




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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Moderator-JB
Posted by Delaine Inman , Nov 18,2001,18:09 Top of Thread Archive
Go Girl, that sounds like somethings I have done. Good idea and it works wonders. I tried that tactic last week on a dealership owned by Darrel Waltrip, the race car driver. My daughter bought a used car and within a week it wasn't starting at times and in 2 weeks not at all. After a little haggling they put in a new battery without checking anything else. The 3rd week it wouldn't start again. They had changed managers and he told her they weren't obligated to do anything. I called and very nicely asked for the manager and explained that we had over paid for a used car because we thought we were buying it from an honest dealer who would treat us well and not sell us a car that was not a good car. The front window says it had undergone 156 checks before putting it on the lot. My daughter was a single mother, full time student and worked full time but did not have the money to repair a car she had just bought and they should make right. It died in front of Nissan dealship and the car is a Nissan. I asked him, "Now are you going to do the right thing and fix this car or do I have to take it across the street and be unhappy with Darrell Waltrip and his dealership for the rest of my life and tell everybody I know that his cars can't be trusted?" He said, "Bring it in." They put a new starter on it and when we drove up to get it they just came out and handed us the keys. Sometimes you have to be assertive to get your needs met and what you deserve from anyone.



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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Nov 17,2001,15:04 Top of Thread Archive
Besides all the other important things you all said, I would like him to ask me how I thought my last injections had worked? Side effects?
Did I have any suggestions as to how I thought these injections might be done better, and then have him talk to me about it.Edith who is 3 days after botox.



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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by Lynn Yarbrough , Nov 17,2001,17:57 Top of Thread Archive
I would be happy to collaborate with you -- writing, proofreading, editting, whatever -- if you wish. If you want, send me an outline or just a set of ideas and I will try to put something together.

--- Lynn




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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Lynn Yarbrough
Posted by Delaine Inman , Nov 17,2001,21:28 Top of Thread Archive
Thanks for the offer. I'll let you know if I get stuck or think I need some help. Thoughts and writing usually comes easily and from my heart. Now spelling, punctuation, and sentence structure, that is another story. That is certainly something I have to have help with sometimes. I'll think it says what I meant and proof reading it a hundred times, I'll still find mistakes because I'm reading it the way I meant it to be. Is that clear as mud? I've been writing stories, articles and poems for as long as I can remember and have had many things published. I was editor of my high school paper and use to write an inspirational article or poem every week for the local paper when my daughter was young. Twice in the newsletter and one was picked up by the French BEBRF newsletter. They sent it to me and I couldn't read it, but it was fun to see it in print. My college professor for creative writing said I was a writer, but nursing paid a lot better. I've never tried to do it for a living.



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Re: Delaine is a great writer

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by barbara hanratty , Nov 17,2001,22:30 Top of Thread Archive
Hi Delaine,
You could definitely write for a living. And you don't need any help. Wouldn't it be something if this drat disorder led you to a life of fame and fortune? Yes!!!!!!!!
Barbara

--modified by barbara hanratty at Sun, Nov 18, 2001, 08:48:38




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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by barbara hanratty , Nov 17,2001,22:24 Top of Thread Archive
Hi Delaine:
Thanks so much for thinking of this project.

I wish doctors wouldn't use the work "annoying" to describe BEB. I know that BEB is not life-threatening, but it is more than annoying.

Many of us have faced life-threatening illnesses. It would be interesting to know how we compare that experience to living with BEB.
I know I find my heart problems a cinch compared to BEB.

On a more positive note, I had a great experience with my new MDS. Besides listening carefully to me, I think she deliberately tricked my symptoms into displaying by doing a lot of talking and explaining herself. Other doctors had sat back and waited for me to talk and blink,which,of course, didn't happen. Two doctors actually asked me to "make it happen"! It makes you wonder if they did their homework.

Barbara in NY




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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- barbara hanratty
Posted by kathy , Nov 18,2001,05:35 Top of Thread Archive
all i had to do is do some on-line ordering from a website the other day to set my eyes off into spasms for most of the remaining day. i can see that i can only do this on a very limited basis! it felt like the visual epilepsy that some children experience after playing too many computer games. and this is with my fl41's on!



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How to show symptoms ...

Re : Re: What do we want from a doctor? --- barbara hanratty
Posted by Moderator-JB , Nov 18,2001,16:14 Top of Thread Archive
My MDS has a great way of getting my spasms and jerks do their thing. he just tells me to ...'let it do what it wants to do.' There seems to be enough of a mind control to stop symptoms for a minute or so, that in reverse also allows you to let them roll.

Judy




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Re: What do we want from a doctor?

Re : What do we want from a doctor? --- Delaine Inman
Posted by kerry horton (KERRY HORTON,kerry horton), Nov 18,2001,21:22 Top of Thread Archive
What we need are HEALERS!
Kerry in CT wishing she could heal her Mom.



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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- kerry horton
Posted by Delaine Inman , Nov 18,2001,21:53 Top of Thread Archive
I know many healers, but it is the body that does the healing. Your love and intention is healing to your Mom. Don't ever doubt or under estimate the power of that. Healing is possible even when cure is not. I have some one on my mailing list who is in remission who called and left a message she doesn't want to be on it anymore because she never plans to attend. I'm going to try and call her and encourage her to talk to me and others, because we need to hear that it is possible. Susan is good enough to keep in touch and others do from time to time. We need the people who do well and those who go into remission to help support us and give us hope. Faith, Hope and Love are healing and those who know how to touch us with it are healers in the truest since of the word. There is no healer who has healed anyone who has healed everyone and we don't know why. But we can't stop seeking to be healed and to heal others. I have laid hands on people and they were healed and the feeling of love pouring from my hands and heart were not from me, but through me. I was changed by the experience each time and never took credit for the work. I don't know why it happens so rarely, but when it does it is amazing, humbling and almost overwhelming. At times it could be frightening as well to know miracles are possible and you were there, fully present. I didn't mean to say all this and not quite sure why I shared something so personal and sacred to me.

--modified by Delaine Inman at Sun, Nov 18, 2001, 21:57:38




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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by kathy , Nov 19,2001,10:17 Top of Thread Archive
you have a blephro in remission??



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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor?/delaine --- kathy
Posted by Delaine Inman , Nov 19,2001,13:40 Top of Thread Archive
Evidently a woman from Franklin, TN. She has never been to a meeting. I have to see if I can find her phone number and call her to see....how, when, etc. So it is possible!



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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor?/delaine --- Delaine Inman
Posted by kathy , Nov 21,2001,06:28 Top of Thread Archive
yes!!! it is pretty important to find out what helped her. you need to find out if this is real, if she did have beb and not a twitch, etc. please keep us informed.



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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor?/delaine --- kathy
Posted by Delaine Inman , Nov 21,2001,08:35 Top of Thread Archive
I didn't have a phone number, so I wrote her yesterday, asking her to write, call, or email. I told her all of us would love to hear her story. We need to hear a little good news to keep us going and believing in the possibility is can and does happen. I'll let you know if I hear from her.



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Re: What do we want from a doctor?/delaine

Re : Re: What do we want from a doctor?/delaine --- Delaine Inman
Posted by kathy , Nov 23,2001,16:36 Top of Thread Archive
thanks for your efforts! we sure do need some good news. wouldn't it be wonderful if......
i know, i know.



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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by kerry horton (KERRY HORTON,kerry horton), Nov 20,2001,12:42 Top of Thread Archive
Delaine:
Thanks for sharing. Sometimes its scary to speak of the most profound truths. I beleive!
Kerry in CT where the Sun just came out (in more ways than one).



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Re: What do we want from a doctor?

Re : Re: What do we want from a doctor? --- Delaine Inman
Posted by Lynn Yarbrough , Nov 20,2001,13:53 Top of Thread Archive
Thanks for sharing yourself in such an intimate way. I have often looked through the scriptures for clues about how I am to deal with my situation. There are a couple of passages where Paul writes of his own physical limitations, which he describes only in broad terms, but part of his conversion experience sounds something like a blepharospasm, and reading between the lines one can envision him as a blephro. (Read the first half of Acts 9.)

But Paul was never completely healed -- apparently his condition was chronic, as is BEB -- and God's word for him was "My grace is sufficient for you", and that's what I've been operating on for many years. And, like others here, I have seen and participated in the healing of several people for several conditions.

As Christians, we are promised trouble. Misery is optional!

--- Lynn




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Re: What do we want from a doctor?/lynn

Re : Re: What do we want from a doctor? --- Lynn Yarbrough
Posted by kathy , Nov 21,2001,06:26 Top of Thread Archive
God gave us a brain to try and figure out and solve those troubles. of course i'm only a woman....



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Re: What do we want from a doctor?/lynn

Re : Re: What do we want from a doctor?/lynn --- kathy
Posted by Delaine Inman , Nov 21,2001,08:51 Top of Thread Archive
Now I'm gonna pretend that you were joking about the "I'm only a woman" remark or else you will have me on the soapbox, again!
The first part of the sentence I couldn't agree more. I believe
the Creator made our bodies to heal.....things just happen sometimes to get in the way. Most are not our fault....like polution and toxins...external and internal. One thing is for sure God gave us a wonderful mind to discover how to cure and find the cause of dis-ease in our bodies and sometimes we get the right conditions for an out right miraculous event to occur. Miracles shouldn't be abnormal and I don't believe for one minute that the God who created us, caused this terrible malfunction in our brains. He gives us Peace, Courage, and Wisdom to find solutions and to cope.



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Re: What do we want from a doctor?/lynn

Re : Re: What do we want from a doctor?/lynn --- Delaine Inman
Posted by kathy , Nov 26,2001,17:49 Top of Thread Archive
i was slightly joking and i'm sure lynn was not equating beb with suffering and the rest which you so rapidly picked up on delaine; which was exactly my point. tommorrow i am having my injections and bringing in lynn's posting about changing the sites and locations of the botox. we can only ask and communicate. lynn, are you listening??



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Re: What do we want from a doctor?/lynn

Re : Re: What do we want from a doctor?/lynn --- kathy
Posted by Lynn Yarbrough , Nov 26,2001,18:45 Top of Thread Archive
Before you go to your Dr. and make suggestions of this kind, please be aware that the kinds of site adjustments I am talking about may be only a few millimeters apart. For example, the site near the inside corner of the eyes is a critical one and the muscle s/he will inject into is about the size of your pinkie nail, so there's not a lot of room for variation. But over time, my Drs. have stopped injecting in the mid-lid because of ptosis, and no longer inject below the eye at all. But how that would affect you I could not say.

I have said before that it's crucial for you and your Dr. to talk extensively and as often as reasonable about how each round of shots affects you, both immediately and as the first 2 weeks progress. It is extremely unlikely that s/he will have had these shots, so yours is the only real experience with the results, and at the same time s/he is the only one of you who can actually see how your eyes respond, and is familiar with the muscle structure.

--- Lynn




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Re: What do we want from a doctor?/lynn

Re : Re: What do we want from a doctor?/lynn --- Lynn Yarbrough
Posted by kathy , Nov 29,2001,03:25 Top of Thread Archive
thank you for your input lynn and please see my posting today and reply further if you can. i tried to discuss this with him before my appt. but their was a death in one of his staffs family and he didn't get the message to return my call. this certainly has been a thanksgiving of extremes and contradictions. i mean for me and worldwide it seems.



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