Lbee, Let me first say that not everyone has to wait 7 years to be diagnosed!!! Push that number right out of your head.
The reason doctors want proof is not about helping you but protecting themselves! Sad yet true. Don't forget that lawyers and risk managers are in the exam room with you!
Everything they do is about making sure they don't leave themselves open for a lawsuit. MG experts usually know a patient probably has MG after an examination. Doctors who are not well-versed in MG don't have as much confidence about diagnosing us.
Xanax for breathing issues? Wow, how scientific. See the attitude I just showed you? You are probably feeling too sick to be able to point out the obvious to doctors. You need a patient advocate, someone with you to talk their talk. Unless you are up to some ideas of how to speak to neuros or those in an ER.
Do you feel anxious? Did the Xanax help? If not, why take a drug that doesn't address what is really going on? Neuros are not psychiatrists (well, some are). They don't have the right to dismiss your symptoms with some armchair psychiatry. Being sick and not being able to breathe well CAUSES a person to be a little anxious. I'm usually really calm during emergencies, but that's me. How did you feel?
Take back your personal power and realize that you are in charge of your health, no matter how ill you feel. Speak to these doctors calmly and in a matter-of-fact manner. Or did you?
Do you have any side effects of Mestinon? Increased tearing or salivation, for instance. People without MG will not improve on Mestinon. They will only have the lovely side effects or overdose effects (from too much acetylcholine).
Mestinon kicks in after about 30 minutes. Two hours later, the drug wears off. There are about two good hours within those three when it works. Increasing the dose amount or increasing the frequency changes from patient to patient. A good MG expert would work with you to figure that out.
They have not proven that you don't have MG. Neither have they proven what disease it is you do have. But what did they do? One of the doctors put you on a steroid! How much did they put you on? Now that you are on a steroid, MG test results are probably going to look normal! Did you ask the doctor who put you on that why he did it and if you can stop it? Of course, if you have MG and stop the drug, you could go into a crisis! That's when doctors are incredibly stupid. They shouldn't put patients with possible MG on anything other than Mestinon, or a diagnosis becomes quite difficult.
What's funny is that they put you on a steroid, but are worried about giving you Mestinon!!!
Does that make any sense to you?! Mestinon is fairly benign, even though too much can cause a cholinergic crisis. A steroid can cause a list of health problems and is very difficult to withdraw from! Did the doctor bother to say that a steroid is an antiprostaglandin and that you should be on a good prostaglandin while taking it, such as flax oil, to keep the gel coating of our stomach in good shape? Did he say to take calcium and vitamin D, or to stay away from salt while on Pred so that you don't blow up like a balloon due to water retention?!
What they need to do for you in an ER is an arterial blood gas, O2 readings, and MIP/MEP. Heck, even a peak flow meter is useful to show how well you are breathing out. A bedside spirometer is usually available at most hospitals. A doctor can't tell by looking if a MG patient is doing poorly. They could also do a Tension test in a hospital.
Did they even do a neurological exam, to test your muscle strength?! Or did they assume that you are an anxious woman because you dared to seek out help when you couldn't breathe well?! Yeah, this sort of doctoring makes me fairly upset.
I don't understand the doctor's response about the breathing tests. And he doesn't understand MG or Mestinon. Even on Mestinon, breathing tests are invaluable. My MIP when I had my MG crisis, while on 90 mg. of Mestinon every three hours, was below -20. My normal is in the -80s. They do MIP in minus sign and MEP in plus sign. Find yourself a pulmonologist and GO!! Call early in the morning and say how badly you are doing. Ask for one of their emergency slots. You have to work the system!!!
Then when you see a pulmonologist, usually after breathing tests are done, ask for an arterial blood gas. Ask for an overnight oximetry. You need to know what your O2 is while you are sleeping. Hypoxemia is dangerous to the heart and brain (and other tissues). A pulmonologist can also help you. And they might be able to get you in to see a MG expert sooner.
A lab that has instrumentation issues makes that test null and void. Period. And that may have been a lie. They might have not done the test in time, not had the capability of doing it, or some other reason. You need the test redone and sent to Mayo.
Do your muscles become weaker the more you do? Do your muscles become stronger after resting/sleeping/Mestinon/Ice Pack test?
MG really is that simple. The disease is a clinical diagnosis, backed up with tests. A negative test doesn't mean a thing. Can scientists prove something with a negative? No!
I'm going to post my favorite quote from a book by MG experts about MG. I'm sure people are tired of reading this, but I'm tired of doctors claiming that we're all anxious.
“Arterial blood gas measurements are a relatively insensitive measure of
impending respiratory decompensation in MG since the initial changes are
consistent with hyperventilation and are usually attributed to anxiety. By the
time CO2 retention occurs, the respiratory muscles have already begun to
decompensate.”
BTW, decompensate means muscle are failing. A MG patient can "have" hypoventilation" from poor breathing, not from being scared or worried or hysterical or fainting or being a pathetic woman who couldn't possibly have a real problem!!!
Not being able to breathe well is a serious health problem. And being weak and SOB is very unsettling. Before my MG crisis, I was having episodes of sudden shortness of breath. I felt as though I might stop breathing altogether. That is a HUGE warning sign. If you are that bad off, you need to dial 911 and have someone meet you at the ER who can speak for you.
Read the PDFs I've attached. Learn what evidence in MG is. Have someone else read that as well.
Maybe you don't have MG. But fatigable weakness only occurs in MG/CMS/LEMS. The worst thing you can do now is to doubt yourself. You KNOW instinctively that you are not well, that your symptoms are not normal. There is no point in going down that road of thinking this is all in your head! Don't even let them know you may have doubts. Then THEY will have doubts.
Sit quietly with yourself. Think about when your symptoms began, how they behave, when they become worse. Do you honestly believe that all of that is normal?
You'll have to be a bit patient. Diagnosing MG can take a few weeks or months, but you can't wait that long if you can't move or breathe well. Use the information about MG to work the system, find other doctors like a pulmonologist, and find some help. Quit working with doctors who don't have a bloody clue about MG, as if they will magically wake up one day and decide to help you.
No MG patient should have to prove they have the disease—as if we are in court needing to prove our innocence! The burden is on a doctor to prove what is going on, and then to help us in a timely fashion!!! That is your right as a patient.
What else can we help you with?! I find this kind of doctoring silly, a waste of time, energy, health, money, and trust. You deserve far better!!!
Annie