I always plan my doctors visits with Past, Present and Future in mind. Keep a journal and let the doctor know your symptoms and treatments in the past ( good and bad ) how things are going at the present time. And most important , where do you want to be in the future and what are your goals ( immediate and long term) . good luck with the new doctor. - Karen

Ginger,

You will find the information in the MG group. If you are not sure how to find the group the link is http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions be sure to view all.

The group contains various key topics, resources and discussions. The topic you are looking for is discussions with your neurologist or the link is http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14150492
Be sure to check out the other topics which will also be helpful.

Just in case you are not aware 25% of MG patients are seronegative and go through a very difficult time getting diagnosed. Testing negative DOES NOT mean you are do not have MG, which means you have to have a very good neurologist who knows and has experience with MG.

Be sure to also check out the article scientific publications discussing seronegative (idiopathic) autoimmune MG link at http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14067745

Wishing you the best at your appointmentlet us know how it goes.

Bruce

Ginger,
If you click on the "groups" tab at the top right of this page it will take you to a page where you can click on "myasthenia gravis links and news". Click the tab that allows you to view all. There is a topic called "discussions with your neurologists" by bweeds. There is good info there.

Karen has good suggestions too.

Does the new neuro have any of your old records?
Cathi

Bruce, we are on the same wavelength. ;-)

Ginger:

I had a much easier time being taken seriously about MG than some others even though I am seronegative, and I wish I could tell you why. One thing I read was that neurologists believe 30% of patients referred to them actually have a psychiatric disorder. So I tried to be matter of fact and calm during my visits so the neuro would not start thinking my problem was psychiatric or stress.

I think it is helpful to be very fact specific about your symptoms, not "I get so tired," but "I have to lower my arms several times while I'm styling my hair". The neurological system is supposed to be quite orderly, and neurologists believe they can narrow down what is wrong with you based on where it occurs, when it occurs, and what it's like (e.g., pain or fatigue) so try to include that information in your answers. I also think doctors in general don't want to hear a lengthy narrative about what's wrong and certainly not everything that doesn't seem right, so I start with a brief statement containing the most important points and let them ask follow up questions.

I know my approach may not be comfortable for everyone, and I can appreciate that folks worry they will leave out a detail that would help the doctor figure out what's wrong. But I've found that doctor's ask the follow up questions they need answers to, and I've been taken more seriously by doctors since I started approaching visits this way.

Hope your visit goes well,
Rhonda

Thank you Rhonda and everyone,
I think you are right, I probably shouldn't give all my symptoms, she'll think I have mental issues like one of my other Doctors. Thanks everyone for your help. I appreciate any suggestions. Ginger

Ginger:

My post was not clearly written in some respects. I do think you should mention all relevant symptoms, but I had more success by starting off with the most important ("I started having blurry vision and now I have leg and arm fatigue that gets better when I rest"), then filling in others as the conversation developed. I think doctors are put off by too much detail.

It seems unfair that in the midst of being sick and worried that we have to worry about these things, but I believe they can make a difference. I changed my approach based on things I read by doctors about patients. I can't say for sure this approach contributed to my quick diagnosis, maybe that was the luck of the draw, but I have been treated more respectfully by doctors since I've been doing this.

Rhonda,
Do you have a link on' things said by doctors about their patients?."
Would be interesting to read.
Lorraine

Rhonda,
In defense of those of us who have had to put up with more testing than thinking on the part of some of our neurologists, it may be that your greatest asset aside from your demeanor was to present honestly a classic history and description of MG. There are those of us who don't know what is going on and whose symptomotology may not match the book and have confounding other medical difficulties. And negative testing may negate any further consideration, even if MG is suspected.

I would emphasize your admonition NOT to say you are tired or fatigued as a chief complaint, but describe in some more dramatic way how your problem is affecting your life. It is always good to give a specific description of a problem because it gives the doctor a lot more information about your difficulties than a general description or a preconceived diagnosis (even, or maybe especially, if it is right.) b.

Thanks Rhonda,
Great tip, but I was wondering, what about demeaner? It's crazy to have to ask these questions but how should I act? When I'm in public or at church, I always do my best to fake and try to act as normal as possible. I don't want to act over sick either, do you have any tips on demeaner? Ginger

Beth:

No need to write in defense of those struggling to get diagnosed to me. I have nothing but sympathy for those folks and at times feel guilty about my own easier situation. My comments are only in the hopes of helping, not to imply anyone is doing anything wrong. I think having to worry about these sorts of things during a doctor's visit is terribly unfair, and as I said above, I don't know if trying them contributed to my quicker diagnosis, only that I have been treated more respectfully. Certainly having a more classic presentation was a huge factor. But I think focusing my remarks in the way I stated so that it was obvious I was having classic symptoms may have been helpful.

Lorraine:
Sorry, I don't have the links anymore. I read a book my mom lent me about talking to your doctor, and I also read a variety of blogs written by doctors about their interactions with patients that made me realize doctors interpret things patients say and do in ways patients would find surprising (and unfair).

Rhonda

I am enjoying and learning from this discussion. Rhonda you made some very important points. We the patient, have to understand the importance of effective communications skills with our MD. It is also important that we also expect the same of our physicians. Some physicians have poor communications, which requires greater importance of effective communications skills to get our answers from those physicians. It does not mean we should back down from seeking our answers.

I was able to go back and find the following MGFA presentation at the 2010 Annual Conference Communicating Effectively with your Physician MGFA Conference 2011.

http://vimeo.com/32141333
This presentation does a good job of reinforcing what Rhonda has suggested.

I have started using Ted Burns, MD Quality of Life Form I have found this form to be helpful with communicating my current MG status. It gives me opportunity to document important examples of my MG problems.
http://www.myasthenia.org/LinkClick.aspx?fileticket=BiunbsOud7E%3d&tabid=291

When I fill out the form I have examples to go with my answers; example I have trouble walking due to my MG. Answer Very Much due to consistent SOB I am unable to walk very far (less than 2-3 minutes), my legs become so weak and I have difficulty getting up stairs and my balance will become unstable.

By filling out the form my MD who is very familiar with the form and has heard Dr. Burns presentation, is able to know my current status verses previous visits. She and I can key on those areas that are more important.

Dr. Burns Quality of Life presentation at the 2011 MGFA Annual conference can be found at http://vimeo.com/32145679

Once we get everyones comments, I would like to link this discussions to the MG Links and Newsdiscussions with your Neurologist that bweeds has already posted.

Bruce

Ginger:
My last neuro appointment I was feeling really good, and perhaps didn't emphasize how rare that was. And I left thinking that I didn't tell him enough about how crummy I feel most of the time. Perhaps I was responding to cues and telling him what I thought he wanted to hear.

When I was at my sickest I was saying all sorts of things to calm people down, and not representing my situation accurately. If I was in danger of getting someone upset, and if that would add to my stress, I would always lie~ Also, as with "how are you?" I have the feeling that people really don't want to know the details. "Fine" is the correct answer.

Got off track there a bit...

Don't worry about demeanor with a neurologist. People take cues from our facial expressions, and when I have bad days, I am accused of being depressed. No - it's just my face sagging! Instead I just smile (or try). ~Joe

Dad always said, "Do you want 'fine' or an organ recital?"

When nurses or doctors ask that question before we are in private, we often give the polite "fine, which we often are not, sometimes we are not even "OK." It leaves us with a lot of backtracking or covering up to do. Dad's answer works quite well in those circumstances and the "organ recital" can wait for the examining room. b.

Ginger:

I think we are expected to fake feeling better than we are in social situations. The bad thing about it is that then people don't realize our actual abilities. I am struggling to find the answer to how to handle that myself as people can expect more than we can physically do.

With doctors, I don't think you should fake feeling better or they cannot evaluate your condition correctly. But I've also seen patients try to "assist" the doctor in recognizing they have a problem by slightly exaggerating for example a limp, and that makes doctors angry. It also made me sad for the patients because I knew there was something wrong and they were just trying to be taken seriously. So I think showing your limitations in a plain but honest fashion is best.

Hope this helps,
Rhonda