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