Bear with me, winic1. I would like you to really hear what I'm saying. I'm not putting you down, but trying to help you out.

You began with a prejudice of your own. There are no good doctors around here. Maybe there are! Maybe you just haven't met one yet. Give them a chance.

Maybe the new doctor will treat you poorly, maybe not. What makes the difference? YOU!!!

Be calm. Try not to be combative at all (no offense). Write down your symptoms. Write down when you first had glasses. Having anything in black and white makes for an official document. Treat the doctor with respect. Heck, even compliment them (aka their ego). Don't talk over them. Ask for time to tell them how your body is doing (not how you feel, for that has nothing to do with medical facts). Stick to the facts. Tell them how whatever is going on is adversely affecting your life, what you are able/unable to do during the day/week.

And don't say that you have MG!!! I know, sounds silly. Allow the doctor to be the authority (since most can't handle a patient knowing something before they do).

And if they end up being someone who isn't nice, well, you can't change anyone's personality. But what you can do is ask them what disease is fatigable and responds to Mestinon other than MG, CMS, or LEMS!

Let the past stay in the past. Don't argue over any of it. Pretend none of it even happened!!! I'm serious. Try to be very reasoned and matter-of-fact. And men often see tears as weakness. Stupid, I know. Then neuros think that we are just basket cases instead of living through true physical suffering!

I have been through more than most when it comes to egos of neurologists. It is truly amazing how they so quickly interject mood or feelings or other nonsense into a scientific discussion, especially with women (yes, some men, too).

To counter that, you can ask if they see ptosis. Can they feel the weakness in your limbs? Why would a drug meant only for someone with low acetylcholine work so well? A placebo effect won't keep someone from the hospital due to a MG crisis! Ask them what testing can be done. Bring up the MuSK, LRP4, etc. Ask for an action plan. Tell them that you'd rather not die from a lack of treatment. Say everything in a very kind way. You can always scream your head off after you leave the clinic!

BTW, have you seen a pulmonologist to have an evaluation of breathing? If not, try to have that done. MIP and MEP are specific tests that show if there is a neuromuscular basis for poor breathing.

We all know how hard this is, especially when you run into egos, senility, stubbornness, and ineffective doctoring. So make this appointment count. Be the very best you can be, without making the doctor your enemy. I don't know you, so I have no idea how you are in an appt. All I can do is give you the best advice based upon my past experiences, which are extensive.

I WANT you to have a GREAT experience!!! And a diagnosis and treatment!


Annie

I can add some other things that helped in my appointments. If you have ptosis, but it is intermittent, take some photos when your ptosis is occurring. Bring those photos with you to your appointment to show the doctor. Mine, for instance, tends to be more prominent in the evening as my muscles get weaker (or during a crisis), so they don't generally see it during an appointment. It has helped my doctors to see photos of my ptosis, so I bring the photos along if I meet a new doctor.

I make sure to bring along the copies of my respiratory tests, the MIP and MEP tests that Annie describes, along with any other records that could be helpful. Even if you've had records forwarded by your doctors, bring your own copies with you to be on the safe side. You may already know that, though.

Annie's post is very good. Try to think positively; this could be a very helpful doctor you're about to meet. I will be wishing you all the best.

Take care,
Erin

As soon as anyone in the office looks for me in the computer system, it will bring up the old records. So there are the reports from the old visits to his colleagues, one of whom is head of the overall department. If he reads them, I'm done before I even walk in. I wish the past could stay in the past. But computers make that an impossibility.

Senile doctor has the reputation of a God around here. Once he has made a declaration, no one will consider anything else. Because of the lawsuit we had going against the guy who smashed into us, I was not allowed (by my lawyer) to request corrections to his report. So there it all sits, waiting to be read on new doctor's computer. And senile doctor had eight pages of all the information on me in his hands, that's the paperwork they make you fill out before you go. But that doesn't get put into the computer. His report does. And no one will contradict a God while he is still on the payroll.

Just hoping new guy isn't a reader, hoping regular neurologist who referred me sent him enough info to make him set aside previous records if he does see them. Hoping he's seen senile guy at work, and knows that it's time to disregard anything he's said. Or I am done before I even walk in the door. It's happened before. And there's no use talking or presenting symptoms or anything if they've already decided based on past history.

The worst part is not that he won't do anything. The worst part is that it means a wasted vacation day for my husband (we don't go on vacations, we use the days up for medical stuff like this, and usually run out). And the long drive. And the stress of finding our way in a city (I can deal with skunks, raccoons, coyotes, no problem. Not cities.) All that, and to end up done before I walk in. I just hope he doesn't read.

With all respect, thoughts do manifest reality.

Yes, I understand what you are up against. However, you do have power over how this appt. goes. They are not all robo-doctors. Some doctors do, in fact, have the authority and courage to speak for themselves.

The alternative is to just give up. That's not acceptable either.

Do what you can do. You do have the power to not talk about the past, which is what I said. Yes, the past is in the computer. Ignore it. Start over.

If you have already decided that it will be a complete waste of time, then it probably will be. I hope that it isn't.


Annie

If thoughts really did manifest reality, my life would be SO much different than it is.

I imagine it is very hard to imagine the upcoming medical appointment going well, when you are returning to the same clinic where you had difficult experiences. I believe it is very possible you could have a much more positive experience, winic1.

Just last week, I returned to the university hospital clinic where I was seen 25 years ago. My local doctors asked me to return for a new problem. Many years ago, I'd been seen by the head of the department, who is a nationally-recognized expert in his field. He was technically excellent, but a very difficult person. At times he unfairly insulted me and yelled at me, as well as other patients. He also constantly yelled at the other staff and doctors. The records from those days are still there, but that doctor has moved to a teaching hospital elsewhere. I didn't know how the appointment this week would go, but I hoped things would go well. The answer is that everything went beautifully. I knew the doctor I saw, because he'd been on staff before. He was extremely kind and eager to help. In fact, he bent over backwards, trying to do all he could to help me feel better.

I'm sharing this story to point out that two doctors in the same department really can have different approaches to their work. The doctor I saw yesterday was not afraid to challenge the senior doctor 25 years ago, for one thing; I was there when they were discussing my treatment and surgeries. I don't know if any of this will help you feel more at ease for your appointment, but to whatever extent it is possible, please try to see this visit as a good opportunity. I hope this new doctor will help provide better diagnosis and treatment for you.

Take care,
Erin

Beautifully written, Erin.

winic1, This isn't New Age nonsense. Please bear with me.

I've been meditating for decades. Unlike many neurologists, I have worked very hard to remove ego from myself (unless ego is useful). I center my day around love, for everyone's sake. Each day, I have a lot of synchronicities. Some people see synchs as looking at the clock and seeing 11:11 or other repetitive number combinations. Yes, that can happen. That can also involve saying a word at the same time a word is said in a show. Those kinds of synchs started happening so much years ago that I hardly watch TV! My family and friends have witnessed that and their shocked reaction is priceless. All those synchs mean is that I am becoming more connected to the universe, listening to it, interacting with it, appreciating it. Not an easy thing to do, especially when so many fairly horrible things have happened to me in my life.

A few weeks ago, the topic of hard-boiled eggs came up with my mom. Throughout the next day, I couldn't stop thinking about eggs. I love them but can't eat them. I had put in an order the day before for a grocery delivery. As I was pulling the food out of the bags, and putting perishables in the fridge, I found an item at the bottom of a bag that I had not ordered. There was a container of 12 organic eggs!!! Kid you not. The universe didn't give me what I truly wanted or could have, but a view of what was possible.

What I meant by thoughts manifesting reality is that what we think is truly powerful. That doesn't mean that what we think of or wish for transpires. The universe has a way of doing what it wants. But if we appreciate what we do have, and realize that we can't truly control our lives (yes, to a certain degree we can) or that of others, there is some magic within that. If we accept our reality, do our best, and love ourselves and others, I truly believe that life does become better. Although, not always in the way we want.

By reacting at the same level of hatred to those who are mean to us, we give them power. By reacting with love and kindness, we are neutralizing that hatred. We can only control our reactions to others. And to ourselves.

As far as how this relates to doctoring, I have found that when I take my ego out of the equation (even with doctors who have truly bad behaviors), and say things with sincerity like, "I'm sorry, are you having a bad day?" or "Is there more I could tell you that might help you figure this out?" the doctor responds in a different way than if I were to be upset.

What is behind being angry? Pain. What can we do to dissolve pain? Show someone more love. Yeah, even doctors need love. Doctors are often whipped into a frenzy of fear over lawsuits, losing their jobs, or not having a great reputation. And many of them are "left-brained" in their approach, which can translate to them being controlling. But they are human. What they might do is push that needy or caring side of themselves even deeper in order to be objective or more controlling with patients. But what ends up happening is that they go to the other extreme and act like brutes. I honestly believe that some doctors don't know how to be kind while being objective.

But we patients can't do anything about that. We can only present our symptoms, clearly explain how they impact our lives, ask for tests, or whatever else we need to do to receive care. And the more "neutral" we are, the better chance we will have of success.

Of course, there are times when nothing works. In those cases, we are usually up against a controlling personality who cannot admit they are wrong. CPs are essentially insecure. They cannot admit they are wrong or imperfect without falling apart! I'm serious. So look beyond that exterior of nastiness. There's usually a heap of fear and insecurity, which you can work with.

I love what Erin said. Doctors have surprised me, too. And I find that a true vulnerability and open communication with a doctor can make them feel more at ease. That reminds of politicians, who dig an even deeper hole the more combative they are, instead of sitting down and having a frank and open conversation.

All I can do is share with you what I know to be true. Only you can work through this very difficult situation you find yourself in. It is truly reprehensible how you have been treated. Doctors have taken an oath, but many seem to forget that harm isn't always removing the wrong diseased kidney. Their behaviors cause us harm as well. Their inability to diagnose and treat us quickly is very harmful. But, again, all we can do is deal with the harm and do what we can to move on and find better help.

I am sorry that you have experienced these difficult situations. But they are in the past. You might still be angry about them, but that anger is only hurting you more. I hope you can appreciate what I'm trying to say. I really want you to have the very best care going forward!


Annie

Doesn't matter anyway. Being snowed out tomorrow morning.
Next available appointment is July.

Oh no...I'm so sorry to hear this winic1. Did you ask them if they have a cancellation list? Sometimes they can get you in sooner if they do.

This is so frustrating. Please keep taking good care of yourself, and I continue to send good thoughts your way.

Take care,
Erin

I'm sorry to hear that. Please go to an ER if you become worse.

Annie