Annie,

DON'T GIVE UP. Take a some deep breaths. Try to relax and love and pamper yourself for the next few days.

I want you to know that I've been exactly where you have been. You can look through my old posts to see that. I know what it feels like to walk out of a doctor's office, stunned and staring into space, feeling like your life counts for nothing, like nobody in the medical community cares if you live or die.

It may be cold comfort but thousands, if not millions of women (and men) have been through what you've been through. Some of us truly have our lives endangered because of it.

I had been dismissed for 9 years. Nine. As it turns out I have not one but three diseases which easily could have killed me. I don't know why I'm still alive, in fact. I'm telling you this so you know that it's not all in your head!

Okay, I'm going to tell you how I finally got medical attention. You can take it or leave it. Or take parts. Whatever will help you. I'm convinced that this is the best approach though! And a lot of credit goes to AnnieB3 and others on this board for their help and ideas and great advice.

1. Don't expect any compassion or effort from doctors. If you get any, it's a bonus, but if you go into this expecting it you are putting your health at risk. It's a business. They make more money if they can dismiss a difficult case, collect their fee and go on. They don't make any money if they have to do any research. And they won't. They can't.

2. Doctors are very smart, but like everyone else they don't remember what they learned in school 20 years ago. They're only going to remember the top 5 diseases, the ones they deal with every day. If you don't fit one of those diagnoses you're probably not going to get any help because they don't have the time to think about it, or research it. But you do. The problem with that is that doctors also hate to be told what they don't know, although I find the younger ones generally more amenable to patients who do their own research. Don't bring up anything to do with alternative medicine. Back up your facts with references from legitimate sources. Use pubmed.gov. Find family or friends with qualifications who can help you if you need it. Keep it short. By the way, I had to diagnose myself with 2 out of 3 diseases and had to go request that the tests be run by my doctors (one in 2008 and one just a month ago).

3. You can't give up. You just can't. Your family loves you and needs you.

4. Okay, here's the most important part: TREAT THIS LIKE YOU ARE A GREAT LAWYER AND THIS IS THE BIGGEST, TOUGHEST, MOST FAMOUS CASE YOU HAVE EVER TRIED. Gather hard, fast, permanent evidence for every thing, big and small, that you can. Videos (keep them under 30 seconds, 5-10 seconds are better), pictures, condensed counts of what you suffer and how often, anything and everything else you can use. Be sure to add copies of any abnormal lab or medical tests which can back up what you're saying. Write out a ONE page, numbered list of your symptoms. Don't write "weakness in arms". Write "Arms are weak. They shake and are painful when I lift anything over 5 pounds. Carrying groceries or blow drying my hair are impossible. I have to rest in bed for an hour after I use my arms". Be specific and use examples. You want to create evidence that

is descriptive
is concrete and easy for a doctor to grasp within two seconds.
will be entered into your medical record
is permanent
is identical from specialist to specialist so everyone is on the same page

This is going to do several things: doctors will know exactly what you're talking about, everybody you see will be on the same page about your symptoms, your symptoms will be much, much harder to dismiss or minimize, and doctors will know in the backs of their minds that this could be used in court against them and, trust me, this is a huge motivating factor whether conscious or not (I'm sorry, I know that sounds harsh and I've never sued anybody but both my son and I have been in serious danger because of doctor neglect and I think we all need to be realistic about the medical situation as it exists right now).

I'm probably going to get in enormous trouble for this, but here's my theory. There are all sorts of people in the world, which is of course a wonderful thing. There are creative people. There are helper people. Doctors are not either of these (totally generalizing here!). They are very smart concrete thinkers. They are very good at memorizing and thinking in concrete terms. That doesn't necessarily make them good diagnosticians. And, if you tell them about symptoms you have but they can't see it right in front of them then they probably won't believe you anymore than they believe in the tooth fairy. The problem with mg and a lot of other diseases is that it changes from moment to moment and the chances of you displaying all your symptoms in their full glory at the moment of the appointment is pretty much zero. So you have to make your symptoms concrete and real for them. That's your job (with the help of family and friends). Also, the medical field sees things in black and white: either you are dying right now or you're not very sick at all. There really isn't a place for invisible, chronic diseases. Someday there will be, but right now there's not.

5. For evidence of breathing problems, I bought an oximeter which records data for up to several hours and can be downloaded onto your computer and you can create reports and graphs to print out and bring to your doctor. Insist that these are entered into your medical record. This will absolutely put the fear of God into your doctors. Of course, this will only work if your oxygen saturations go down when you lie down or have difficulty breathing or your heart rate increases or goes way down. Otherwise, you can try a peak flow meter which can measure the strength of your breath. In that case, you will have to record the data yourself and doctors will be more skeptical, but still if you record say, three or four weeks of good breathing and bad and type it up really well - maybe graph it - and enter it into your records then it will be something they can't ignore. Here's a link to what I bought:

http://www.amazon.com/Wrist-Pulse-Ox...540863&sr=8-42

I know it's expensive, but it's cheaper than a funeral.

6. Don't wear makeup. Don't wear nice clothes. Don't look put together. Call me paranoid, but I even went so far as to not pluck my eyebrows with a perky little arch. I'm not kidding!

7. Don't back down. When the doctor dismisses you or downplays you here is what a psychologist would tell you to do:
Look pleasant and repeat back what they said in slightly different words, no matter how ridiculous. "I see, so sometimes people who can't breathe are really just depressed." Not as a question but as a calm, objective statement.
Then repeat exactly what you said the first time. "My concern is that I suffocate and can't breathe when I lie down. It's an extremely dangerous situation."

Sometimes just repeating back ridiculous statments helps because the doctor can hear what she's saying.

Use definite statements and underline (calmly) the seriousness of it. Don't say, "I feel sometimes like I have trouble breathing. I worry that something could be really wrong". Say instead, "I can't breathe. My family is terrified when they see me unable to breathe. This is a very serious situation."

YOU WILL PROBABLY HAVE TO GO THROUGH THE PROCESS OF REPEATING BACK WHAT THE DOCTOR SAID THEN REPEATING YOUR OWN POINT 3 OR 4 TIMES. Really. This is a proven technique for dealing with very difficult people and it works well with doctors. In fact, I just used it with my pediatrician who was trying to refuse me a referral for my son. It worked!

8. You will have to train yourself not to doubt yourself while in a doctor's office. Even I, and everyone who knows me will agree, who am bullheaded, really too good at arguing, and probably have much more confidence around docs than the average person because I'm a mathematician and am comfortable reading through medical journals (at least the conclusion and statistical analysis parts ) have been reduced to a spluttering, incoherent person who has completely forgotten that she has laid in bed dying for a week before arriving at the doctor's office. Here's a trick: write yourself a letter when you are really sick. So sick you don't think you can survive writing the letter. Describe what you are feeling, suffering, thinking. Read it while you're in the waiting room.

9. Take a man with you. A husband, a grown son, a brother, a family friend. Go over the top 3 main points/requests that you want to get across to the doctor. Go over the top 5 symptoms. Have the man tell the doctor. This will be 100 times more effective than you doing it (although you should say them too). It may be hard to believe, but it's true.

10. Always get copies of every single page of your medical records. This will accomplish several things:
When you walk in with a binder of your (pertinent) records you make the doctor's job easier and they usually appreciate it
You will probably find abnormal test results that you weren't told about. This happened to me a lot.
When you gather all of your abnormal tests and add them with the other evidence it makes a more powerful picture of just how
sick you are
The doctor will realize you have your stuff together and that may earn you more respect
You can tell from the doctor's notes which doctors are really listening and which ones have blown you off. Some notes will
beautifully reflect what you have said and other notes will make you wonder if they sent you the wrong notes by accident.



11. Don't be afraid to fire your doctor. There is a terrible catch-22 for patients where they're stigmatized for "doctor shopping" on the one hand but can't get any help on the other. Don't forget you are paying the doctors a fortune. I've said it before but I think it's worth saying again: doctors are the only people I've ever heard of who can be presented with a problem to solve in their work and choose not to solve it or even work on it and still get paid. A lot. Can you imagine telling your boss, "eh, I don't think it's possible to write this program, in fact I think you're crazy for even wanting it, I'm just not going to work on it. Oh, and here's my bill". The world only works that way for doctors. Okay, here's a joke I made up that might cheer you up:

How many neurologists does it take to change a lightbulb?
Answer: There's nothing wrong with the lightbulb, you're just being hysterical. You need to see a psychiatrist.

I will tell you that I have seen over 20 doctors in 5 states across the country. Yup, it's true. And I have 3 diseases. And I had positive mg antibodies for two full years before I could get any treatment. And I had to figure out on my own that I had mg and I had to beg the doctors to give me the test.

I know I probably sound bitter and difficult. I'm not, but I've had a heck of a time getting any help. Well, maybe I am at this point, I don't know. Still, I think there's a way to get this accomplished without being nasty or giving up and I just wanted to put this out there as what I have learned the hard way. Your post broke my heart and I know what a terrible position you're in. So, take what you like from my advice, I hope it can help you.

And don't give up!!!!!!

Ally

Had brain MRI that my internist ordered. Mayo said I should have a muscle biopsy and an MRI as next steps if the blood test for myotonic dystrophy was negative. The MD was brought up because my breathing is worse than normal for MG per se. The pulmo there said this is what he susupected. My neuro here refused to do an MRI so I asked my internist and she did it.

But I was disappointed that she didnt order my neck and spine done as if there is something there affecting my midbody it would be good to know.

Annie59

Bluesky, your piece was so helpful. I do have a peak flow meter and tried to do that about 2 weeks ago. After doing it a couple times for 2 days I was worse from the work of it. Now I knw this may sound odd. I was surprised as I hadnt used it since 2006. Alot has changed. The problem was that using it was making me worse. This is what happens to me with breathing tests.

When the young doc used her stethoscope to ck my breathing and I was breaathing irregularly she stopped and said breath normally. I said I am and my duaghter backed me up. But this in looking back means they took the word of the old neuro I saw about the autonomic dysfunc who blamed me for the symptoms.

I know better what I have to do now. A priority is to not lose my mestinon and I did fight for that tho was so sick and out of it that day so I am proud of myself.

Annie59

Annie, I just wanted to say that I'm so sorry for your horrible experience, and the hopelessness it creates. I would feel completely devastated in your place. I hope the day comes, and very soon, where you look back and say, "I don't know how I got through that, but I did!"

Abby

ALLY: I can not thank you enough! I am AGAIN being sent off as "being far too difficult/complicated" a case for present neuro.

So I get to go see a specialist/research MS/MG neurologist at Univ Medical this next week (Tues).

I got all my medical records/scans/mris and "tried" to begin list of my priorities of concerns but have been putting it off on back burner.

Too heavy a load to process and muddle through.

BUT, You Have Inspired Me to Persevere!!!

So, I will take your wealth of knowledge /experiences and treasure your wisdom.

I know it will help my next visit and presentation.

With all my heart, ALLY, I thank you.

Ally, Thank you for this piece:
"There is a terrible catch-22 for patients where they're stigmatized for "doctor shopping" on the one hand but can't get any help on the other. Don't forget you are paying the doctors a fortune. I've said it before but I think it's worth saying again: doctors are the only people I've ever heard of who can be presented with a problem to solve in their work and choose not to solve it or even work on it and still get paid. A lot. Can you imagine telling your boss, "eh, I don't think it's possible to write this program, in fact I think you're crazy for even wanting it, I'm just not going to work on it. Oh, and here's my bill". The world only works that way for doctors. Okay, here's a joke I made up that might cheer you up:

How many neurologists does it take to change a lightbulb?
Answer: There's nothing wrong with the lightbulb, you're just being hysterical. You need to see a psychiatrist."

Joke and all. I just got thru the rest of your post. There is alot of good stuff here. You are very easy to understand. I used to produce instructions and labeling for an electrical products firm. I am fierce on hard to understand stuff. Now my writing now doesnt reflect what I used to do but I did a better job than the previous folks. Being a pretty good computer artist helped. You perhaps are a writer. You sure do it well.

Annie59

A couple thoughts, questions I guess. How do I counter the negative statements that are already in the record? What I am doing by not dignifying them or sporadically bringing them up is not working. Dr T the neuro that does autonomic disorders is the biggest offender and possibly the one that started this cascade of negativity in January.

That being the inference that I am not to be believed. Thank Heaven my pulmo believes what he sees and is such a nice guy or would be doing what the others did. I seem to still have my internist. But since this neuro said I need to only go to internist and leave my pulmo out of it. I fear she thinks internist is more like her. Ya know if they would respect me enough or is having the guts to be honest with me that they dont believe the symptoms it would be different...........maybe not much. It is about not being treated like a child, patronized. Maybe even treated as a victim which is worse.

My youngest wont call me back. I fear she is so scared that she wont even answer my calls to come visit. I miss her and the babies. She has Epilepsy and stress can make her worse so I respect that she needs to protect herself. Her health. I am not sure what to do. Just realized I should make this a separate thread.

Annie59

Tresa: thank you so much for your nice note! You made my day. I think it's a really good thing that you're being labelled as complicated instead of crazy. Just keep at it, that's what I say!!!

Annie: I hear you, I really do. I think we're all treated like idiots or children at some point in the diagnostic process. And I think that having negative doctor's opinions is a very serious, harmful thing.

Here are my thoughts on what you can do about it:

1. Gather all your hard evidence in one place which can show that what you're saying is true. If you're lucky enough that your symptoms can be proven objectively than it won't matter what the bad doctors say. For instance, I've had very bad luck with internists. The first one for years insisted that I was depressed. She was still telling an mg specialist that I was depressed a year ago. The second insisted that I had fibromyalgia which is code for crazy lady around here and as a result no specialist would help me. Now, I have blood results, muscle biopsies, some pretty darn startling videos of my muscle problems, pictures of my facial weakness and emg results to back up my case. Now THEY are the ones that look like idiots, not me.

2. Number 1 only works after you've gathered the evidence. While you're gathering evidence I think that the only thing you can do is cut the bad doctors out completely. Obviously, don't mention to any new doctor that you ever went to see the old doctors. Never include the medical records from them. Don't use them to refer you to new doctors. If the doctors you have now already know about them and believe them then, if you can, drop those doctors and start from scratch. Hand the new doctors records and test results that back up your case. I'm not saying don't pass on any actual test results that go against your theories. Not at all! I'm saying don't include the ridiculous opinions based on nothing but a fundamental disrespect for you as an intelligent human being based on no hard evidence.

3. My experience has been that doctors will not forward records or letters they get from other specialists. I'm not clear if that is a law or just professional courtesy but it actually really works in your favor.

4. Don't ask any doctors to forward records to new specialists. Send them or bring them yourself and obviously don't bring in anything that implies you should not be listened to or minimizes your health problems. Remember, it's just this doctor's opinion. He doesn't actually have any hard evidence to back it up. There's no law that says just because he's a doctor you have to respect anything he said. Doctors can be idiots too. Plus, it's always struck me as odd that doctors will absolutely refuse to go the last inch and diagnose myasthenia gravis, for instance, even though the patient has a lot of the symptoms but they won't hesitate to throw out a depression diagnosis instead when the patient doesn't match ANY of the clinical depression criteria. The same thing happened to me with fibromyalgia. I didn't actually have any of the symptoms but got the diagnosis anyway.

5. Prepare yourself in case a doctor does challenge you with the other doctor's bad opinions. Calmly list a few points why you don't think that the other opinion is right. You really have to be able to just nail this in three or four sentences to prove that he is wrong so practice ahead of time and know what you're going to say.

6. Look into the possibility that your pulmo could help. He may be able to get you to a better neuro that has worked with him and would respect his opinion. He's not likely to mention the first neuro and you shouldn't either.

7. If all your records are stored in one place electronically then you're going to have a tougher time. You may need to get out of the one system (say, if you were in Kaiser or another HMO) and jump to another. Having said that though, I have dumb records from a couple of neuros on one system and I have never had other doctors read through it. They don't have the time. If you present them with your own records and tests in an easy format they're probably going to look at those instead.

8. Who cares what your last neuro says about not seeing your pulmonologist? She's not ruler of the world and you don't have to do what she says.

It's so sad what your youngest is going through. And it makes it all the harder for you knowing that she is so scared. When you're in the doctors office remind yourself of all of this. Use your inner momma bear to motivate yourself to advocate your case. Honestly, I would have given up years ago except for the fact that I was damned if I was going to let my children be orphans if there was anything I could do about it (their father died of cancer when they were little). I know that yours are all grown up but they still love you and your little grandbabies need a grandma. So, go get 'em grandma!

Ally

I just had to say thank you all again. Your words and experience and caring have been a blanket that held me for time as I tried to sort this all out. It got me to a better place.

Annie59

Ally,

Thank you for your wonderful encouraging words. I know my problems aren't as bad as others with mg, at least I have a diagnosis and treatment, but your words will help with my own current issues.

Susan