I've posted my history in an earlier post, so that may be helpful if you read this.
I know from what I have read here and in other places, that MG is not easy to diagnose and that it often takes years. So, in a sense, I am getting closer than many people. But, I had an appointment at a MG clinic to get the diagnosis confirmed, and it was cancelled. They have one doctor that dose single fiber EMGs and it may be three more weeks. When I talked to the nurse who scheudlued my appt. last week, and we talked about my symptoms, she suggested I needed to take 60mg without telling me to. At 30mg every 4 hours, I could walk better, but I had very little endurance and I couldn't go to the store without having weakness in my legs. I was short of breath with activity. I called my neurologist and he did not want me to take 60mg because he was concerned I would have a reaction. He said he would not refill the prescription because the diagnosis is not confirmed and Mestinon can cause severe reactions. He said go the ER with shortness of breath. I did that a week ago, and they talked to him and he felt I had anxiety and put me on a low dose of Xanax. I tried it and it didn't help my shortness of breath. So, I took 60mg of Mestinon on on my own and took it every 6 hours because I didn't want to run out. I felt much better until about 4-5 hours after taking it, then my symptoms started coming back. Then I started having shortness of breath in the night, not severe, but I have to sleep sitting up. I was also having it after 5-6 hours after taking my last dose while awake. So I went to another ER. They refilled the Mestinon to get me through about 20-30 days, but said see the specialist. I asked about pulmonary function test, and he thought it would show restrictive breathing when the medication wears off and improvement when it is at its peak. He said there are treatments, like IVIG, but no one would want to do that until they confirm this diagnosis. I asked the nurse at the MG clinic if i could come in anyway, even knowing I may not leave knowing what is going on. She said after reading my history the Dr is not convinced I have this, and it sounds like he will not be until I have the special EMG or positive antibodies. I still need the Musk antibody test. My first acetycholine receptor antibody test was negative. But the lab was having instrument issues and it took 18 days to get back.
I've even started questioning myself...what if this is all in my head? Has anyone else ever felt that way? Is it common that no one wants to believe you have this until it is confirmed? I just worry because of my breathing difficulty.

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

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 19 views)
	MGRespiratoryComplications.pdf (95.6 KB, 143 views)
	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 37 views)
	NonInvasiveVentilation.pdf (76.9 KB, 15 views)
	Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 14 views)

Oh my goodness, my post got deleted when I went to send it

I don't have time to retype, but thank so much Annie for all of this information and taking the time to help me. You are an angel. You have been very helpful during this time when I feel so overwhelmed. Yes, my weakness has always been fatiguable, Mestinon and rest help. I did the ice pack test weeks ago and it improved my ptosis. And no, the Xanax and Klonopin never helped my shortness of breath. I know it is real, I am just overwhelmed.

Lbee

You're very sweet, but I doubt angel is the term doctors would use to describe me!

Facing down a disease is overwhelming. Give yourself a break! What you need to do now is a lot of self-care. Sleep as much as you can, eat nutritious foods, laugh, watch movies, or whatever else you like to do that doesn't involve too much moving around.

Find a pulmonologist ASAP. They could also redo the antibody test. Make sure they do the MIP/MEP. Don't wait for care.

If I told you some of my neuro stories, you would freak! And I'm still here, doing okay. So please relax and don't stress yourself out. However, if you do become worse, 911 is your next best move.

We've all been to that place of "OMG, I can't believe I become worse the more I do!" There are still days that I find that overwhelming. Take one moment at a time! Meditate if you can. And keep trusting those instincts!

Annie

Hi LBee,

I am sorry it is so difficult to find the help you need, along with the diagnosis! I have had a similar path with my myasthenia gravis. It is really hard for the doctors, it seems, when you don't have the positive blood tests. They want to have that! It's easier on everyone when there are a lot of positive results to prove that you have a disorder. But it is possible to have myasthenia gravis, even without the results. That seems to be my case, although it took me awhile to find a neurologist who would believe in me and provide appropriate care.

Prescribing Mestinon is actually a pretty safe drug if it is helping you, though. The first neurologist I saw did the same thing that yours is doing. He refused to prescribe it when I had negative test results, even though it was helping me. I had to find another neurologist.

If you have ptosis, another idea might be to visit your ophthalmologist, if you have one, and talk to them about your ptosis. If they witness it and confirm it, they might provide more support for the diagnosis. My ophthalmologist was one the first doctor who believed I had MG. The ophthalmologist might be willing to talk with your other doctors. It's a good idea to take photos of your ptosis at its worst to show the ophthalmologist, especially if it is fatiguable. I did that, and it really helped. I also bring those photos with me if I see new neurologists.

If your breathing, swallowing, and weakness continue to worsen, please go back to the ER again...or visit another area ER if you have choices nearby. I agree with everything that Annie said. She is so wise! We are so lucky to have her in the forum. She is right...do be sure to rest and take good care of yourself as best you can, much more than you think. I don't know where you live, but if you are having warm weather, also be careful to try to stay cool as best you can. Heat can make these symptoms worse.

Sending lots of good wishes your way,
Erin

hi i'm AK,

last 10 months have been tragically comedic.

1. first sign of MG appeared in Mar 2016, ptosis of left eye, fatigue wo cause. Usually went away n no pain so i didn't do anything about it.

2. secondly in July 2016 went to Mayo bc i felt like i was getting weaker, despite regularly exercising and improved diet. if i pushed myself breathing was incredibly difficult, more than being out of shape. i was actually doing less training reps than when i iniated training.

3. thirdly Aug 2016.i felt like i wasn't seeing as well.

4. double vision, blurriness, began in Oct 2016. ophthalmologist only found mild near sightedness n glasses were for driving at night.

5. Feb 2017 fatiguable weakness cont'd n vision loss, 2nd opinion on eyes gave a more complete pic for my eyes, homonynymous hemaniopsia =85% chance brain tumor or lesion affecting optic nerve.

6. brain MRI Mar 2017 - follow up with neurologist in May my brain is fine other than i'm a little left of center (mr shakespeare too!)

7. Jun 14, 2017 follow up with ophthalmologist states 2 things clearly 1. he can't improve on my vision as it continues to deteriorate with glasses. 2. opines best guess is MG.

8. as i inform myself about MG it fits 3things i couldn't connect.
A. General feeling of getting weaker which was y i went to Mayo initially.
B. Explained my declining vision.
C. Explained what i now understand as MG crisis
i experienced on two occasions.
1. Feb 2017 after 30 min warm up for a TT tournament i sat for 30 n during that @test" i collapsed from weakness, labored breathing felt like a 100 lb body suit was put on me.
2. Apr 2017 it repeated in a similar fashion, more intense, i should have went to ER, had no idea what was happening. i feel lucky to have survived.

i have found ice helps immensely if i struggle to breathe, a bag of ice on the chest will keep the diagphragm from overheating n the collagen won't break down.

more to the story later. peace!