I've told my story previously... but basically I am newly diagnosed. My neuro and opthamologists misdiagnosed me with multiple cranial nerve palsies and it took my constant freaking out for the neuro to finally schedule me for the Myasthenia Gravis blood test. He laughed and said he was sure I didn't have it and for my "peace of mind," he would set it up. 3 1/2 weeks later, I got the results and I am positive. He prescribed me 20mg of Prednisone only.

Within a few weeks, my symptoms have rapidly spread from severe double vision and blurriness to facial muscles, my tongue, my throat muscles and my arms and shoulders. I can live with everything except the throat muscles. I am having trouble swallowing and in the past few weeks, I have had 3 incidents of choking, usually going without breath for minutes while choking, Food just stops in the middle of my throat and I'm unable to swallow it or spit it up.

My primary care physician questioned why the Neurologist didn't give me Mestinon and gave me a prescription for 60mg, twice a day. I take it before breakfast and dinner and it gives me a few hours where I can swallow my food. I also have issues swallowing mucus and saliva at times, which kept me up at night. The primary care then prescribed the extended release Mestonin, but is adamant that it "lasts for 24 hours" and also can not be taken with the regular version. I am now having issues throughout the entire day of swallowing problems and it's almost impossible for me to talk by early evening. I have called and begged for more, I even printed out the medication brochure and highlighted the proper dosages and average use. Now, he won't return my calls at all. The neuro refuses to up the dose because he said he didn't prescribe it.

I have an appointment with an MG specialist, but not until the second week of December! So what do I do? Will I have to go to the emergency room of the hospital where that specialist is to get quicker attention? His office said the specialist can not prescribe anything until he sees me. I even described my horrible swallowing issues and choking. I also have difficulty breathing at times.

I do not understand why this is all being taken so lightly by the doctors.

Wow, that's an awful situation to be in, especially since you know you're right. I do think ER is a viable option. It's always a gamble as to whether or not you will get a good team once you are there, but if you go armed with your prescription bottles, and literature, that should help. Personally, I have never had a problem with ER and I live in a rural town that doesn't see much of anything other than oldies, kids with ear infections and folks with farm injuries.

You seem very aware of the importance of breathing and swallowing, which is good. It sounds obvious, but many people get themselves into trouble by waiting to see if things improve. Trust your gut when you feel things are getting out of your comfort zone. At that point, head to ER.

Best of luck to you.

Now, even with the Mestonin, I am having trouble swallowing. I can not tell if the food has gone down or is stuck in my throat until the next attempt to swallow. I spent over an hour last night attempting to eat chinese food. I end up choking a lot of it up and struggling to get some to go down fully. Originally, I could drink some fluids between bites to wash food down, but now the muscles seem to be practically not working at all, so the liquids just come out my nose.

I just wasn't sure what a hospital emergency room COULD do. I live in a small town where the hospitals aren't probably able to do anything. But I can take a train over to Philadelphia where the specialist is located. Perhaps they would at least speak to him and because I'd be in the ER or admitted, he could prescribe enough medications or a course of action. I am ignoring a lot of muscle issues elsewhere, but my throat muscles have me petrified. My insurance relies on referrals and my family doctor is not only ignoring my calls and letter for more meds, but he hasn't put in for the referral for the appointment I was able to secure with this MG specialist next month. I'm also hoping if I go to their ER, they could give me that referral. This is just so frustrating because I've only had symptoms for a little over 2 months and it has hit me like a freight train. But the current doctors are acting like it's just a common cold.

Small ERs stabilize you and then can transfer you to the appropriate facility. They can also sometimes find you a doc who can see you sooner.

I would hesitate to ride a train to ER. That kind of negates the actual "emergency" part of the deal in the eyes of the ER staff. It also is risky if you are having a lot of trouble.

In any case, it sounds like you are in need of more help sooner than later. If I were you, I'd formulate a plan and act.

Hi JerzyBoy,
What a pity to rely on people with little experience...
Regular Mestinon acts for about 3 to 4 hours and is normally taken during the day. To cope with the night period and facilitate life in the morning, slow release Mestinon is normally prescribed to be taken just before going to bed and acts for 12 hrs.
Forget about your present neuro and go back to your primary care physican, explain your situation and try to have him prescribe about 4x60 mg per day to be taken every 4 hours and take the slow release nightly.
You could also take two slow release per day, one in the morning and the other at night.
This until you see the MG specialist.
If your symptoms worsen, reduce the Mestinon dosage.
Be careful with swallowing problems, choking could be lethal...
Take more meals of reduced quantities, do not speak while chewing or swallowing (the same muscles are involved), drink liquids with a straw and take little sips. While swallowing, your jaw shoud be about 2 inches from your chin. Mix your meat wih a blender and do not hesitate to add spices. Some foods are easier to chew and swallow than other. Lettuce for ex, requires a lot of work for little benefits, I found raviolis smarter than spaghetti, aso...
Were you advised to avoid medications which increase MG, were you advised to avoid beverages containing quinine?
The MG specialist should give you the appropriate treatment for your case.
Keep us informed.
Maurice.

So the extended version lasts for about 12 hours? I read on the Mestonin website that it lasts 2.5 x's longer than the standard 60mg version, but everyone has a different opinion on how long the standard 60mg version lasts. I don't want to take too much because it is definitely giving me a huge saliva issue.

Also, when should I expect ANY relief of symptoms? I have been dealing with extreme horizontal and vertical double vision that is 24/7. Along with that, I have bad blurriness. I have issues with muscles in my face, my tongue, swallowing muscles, speaking muscles and it's also in my arms. The day this struck me in August, I was going to the gym 4 times a week. Now, I can barely lift 10lb dumbbells a few times. And this 24 hours a day. At no time do I feel I can lift things, etc. I am taking 20mg of Prednisone, 180 extended Mestonin twice a day and also 1 or 2 60mg standard Mestonin. I still have trouble speaking at times and my neck muscles always are sore, I guess from supporting my head. I also have an issue where I can never lay flat on my stomach or my back. Immediately after I do this, I have trouble breathing. And this doesn't really make much sense to me.

Been there twice almost the same as what you went through it sounds like in July. Yes very very scary. Good thing you are feeling better. It's a long road. I don't know what the bumps will be day to day.

I also had a clean CT but they didn't suggest thymus removal. I'm not sure if it's the Docs themselves or the what that makes such difference in the treatment decisions. You have to let me know what you decide

My double vision and droop on the right are so bad. I am ready to go back to the eye doc though and have another check. I think it's causing regular vision problems in both eyes.

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I am meeting with the surgeon on Dec 14. With everything I've read, I am leaning towards having it removed. I'm scared to death of the surgery and skeptical and realistic about what it can help, but what choice do we have? Considering how bad my symptoms have been in the short amount of time, I think I need to do this sooner or later and hope for the best. I just wish my double vision wasn't worth now than when I went into the hospital, it's very frustrating.

I had to spend some time in Hospital for a course of plasmapharesis after nearly going into crisis, myself. That sort of 'resets' you to let the medications get to working.

One of the things you mention is that you have trouble breathing in certain positions. In talking with other people in the local MGFA group, it seems that almost all of us have CPAP machines. I know that before I was diagnosed, I had a couple times where I was choking pretty badly, and was able to use mine as a sort of emergency ventilator, so I could breathe. It was able to get air past the collapsed muscles in my neck and let me breathe. You might want to ask one of your Dr.s about this.

Since I've been home, I have not had any breathing issues except the typical shortness of breath when running around a bit too much. At night, I am able to lay on my stomach and back, although I don't know if that will be a long term thing. Today was the best day I've had in weeks and weeks. Although my vision is still bad, with zero improvement, I am breathing good and today was the first day I didn't have any speaking issues. Even my friend said it's the best I have sounded since I got the MG. I am interested in the CPAP or something similar though, I snore and I was told that my oxygen levels weren't as good when I was sleeping while in the hospital. I wake up at times, so it's possible it is due to some breathing issues.