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.

So sorry you are having so many symptoms. I've been there, still go there from time to time.

It's my understanding that Timespans work about 8 hours or so, which is closer to what you've learned as well. The saliva issue can be caused from both too much or too little mestinon, so it may take a while to find a balance.

As for when you can expect symptoms to improve, that is impossible to say. I am pretty certain you are not properly medicated. The pred dosage is relatively small, the mestinon dosage too low and almost everyone requires polypharmacy to get relief when symptoms are so troubling. It will take time to find a combo that provides relief. In the meantime, the gym is probably not the best place for you, even if you aren't doing big workouts.

Take care.

I fully agree with 4-eyes, you are definitely not properly medicated. You didn't tell that you were taking 20 mg/d Pred, when did you start this? Did your condition worsened with Pred? If yes, this is quite common but your dosage will probably be increased to 1 mg/kg of your weight. The early stages of your MG are the same as mine and it took about 1 to 2 months at 50 mg Pred for the double vision to disappear. Limb weakness (I had trouble brushing my teeth...) stayed much longer despite Cellcept, IVIG and only Plex with Mestinon (6x60 mg + 1 timespan) were effective.
Curiousy my early weakness was in the arms, the legs were OK but after 6 months, the weakness switched to my legs and the arms gradually improved. Laying flat is usually very difficult (saliva swallowing...) and I was sleeping half sit.
Again, with 4-eyes, avoid gym...
Maurice.

Hi, Jerzy Boy. Welcome.

You know how when you get stressed about something and get tense? You need to practice relaxing your muscles throughout the day. You might not even know that you are tensing up your swallowing/neck/head muscles. After a while, you get used to being in a relaxed mode all day to try to avoid getting too weak. By tensing up, you are making muscles weaker.

Then don't lie on your back or stomach! MG tells you what it can or can't do, so roll with the punches.

I sure can't do either. I always sleep on my side, propped up with two pillows (Homedics pillow from HSN, since it supports my head well). You could even try a neck brace to support your head and neck muscles throughout the day. Even a U-shaped pillow can take the tension off of those muscles while sitting. I like the buckwheat hull pillows because they're cool and not rock hard like some are.

I have similar questions about the steroids. When did you start and how soon afterward did you feel worse? Did they advise you on taking good prostaglandins while on that anti-prostaglandin drug (i.e., fish/olive/flax oil, etc.)?! Did they recommend that you take vitamin D and calcium while on it? Any advice?

Other things that can make you weaker are electrolyte imbalances, thyroid conditions, and a B12 deficiency. Make sure that they aren't missing something. Many of us have more than one thing going on.

Mestinon Timespan doesn't last more than 12 hours. That doctor needs to read up on it.

A Mestinon tablet or syrup usually kick in after about 30 minutes. Two hours after that (2-1/2 hours after taking it), it wears off. You get about two good hours of use.

The symptoms of too much and not enough are very similar, so you have to go by how you feel when it wears off (partly). If you feel worse after taking it, you might be taking too much. If you feel stronger, then it's working.

Side effects like increased salivation can go away after initial use. How long have you been taking it?

Ditto on what 4-eyes said. NEVER take a train to get any care. Have your doctor write out what's wrong and what to do if you get worse. They can always transfer you via an ambulance if need be. That's invaluable. Even oxygen will help you on route to getting more help.

You really need to have a conversation with someone soon about your condition, even if over the phone. Call your neuro's nurse and discuss this—in the morning when your swallow is better.

Until you get to know MG better, SLOW DOWN. Ditto on the no gym thing. You're not normal anymore, so your lifestyle needs to reflect that. It's really hard to get used to any disease, but MG is very tricky. It's not only "the more you do the worse you get." MG can have a cumulative effect and it can make you suddenly weak if you push too far. So give yourself some time to get used to living with it, learning as much as you can, and stabilizing it with a better treatment. Even so, one of the best treatments for MG is balancing activity with rest.

I know this sucks. We all do. But MG is not as benign as a common cold. It can kill us. You can get through this and be okay, but not without some modifications to your life. And asking for help when you need it.

Take it easy and call the neuro's office.

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 3180 views)

Annie,
Thanks for the long reply and so much info.

I am waiting on an MG specialist... I have an appointment on December 2. I finally got the appointment and the referral.

The problem I am facing is that my family doctor doesn't know anything about Myasthenia Gravis. He said he has had one patient and in his words "he lived to be 93 and died from heart issues." I was originally referred to the Neurologist for ADHD, but MG hit me a few weeks before my appointment. So when I got to my Neuro, he just continued misdiagnosing my double vision and BOTH eyelid droop (one at a time) as multiple cranial nerve palsies. During 2 examinations, he said I definitely had the palsies and even after I googled "alternate eyelid drooping" and it kept only coming up with MG results, he laughed at me and said I did not have it. I suffer from anxiety and eventually went into "insanity Google mode" where despite my vision being doubled horizontally and vertically, I spent all day and night Googling MG. Finally, my neuro scheduled the MG blood test "to put my mind at ease." There is only one company that does this test, so the results took over 3 weeks. When I went back to the Neuro, he apologized and said I tested positive. By then, I was having issues with my tongue and shortly after, it spread to my swallowing muscles, neck, face and chin muscles, shoulders, arms and now my hands are extremely sore and weak, but I don't know if MG can do that. That Neuro gave me a referral to another MG specialist, but I couldn't get an appointment until the end of December, so I had my family doctor give me a referral for what I believe is a better doctor and hospital in Philadelphia. This current Neuro said he wouldn't give me other meds "due to possible side effects," but he gave me Prednisone. I started at 10mg for 1 week and then 20mg since. I have been taking this dosage for a month now. I feel NO improvements, in fact, my vision blurriness is insane now. I have to go right up on anything to read and I had 20/20 vision. I don't know if it's the MG progression or the medications. I ended up going to the family doctor who questioned why the Neuro didn't give me Mestonin, so he did. He only gave me a prescription for 60mg reg pills, twice a day. But after arguing with him for a few weeks and bringing the brochure on dosing to his office, I now have the 180mg extended twice a day and 60mg reg twice a day. The only relief I get from it is a slight improvement swallowing and talking. But I still have issues eating any solid food and if I talk a few minutes, I have problems... medicine or not.

Right now, I'm supposed to go back to this Neuro tomorrow, where I will bring in Prednisone dosing info for MG and hope he ups the dosage. I count each day until I can get to the specialist!!!

And as far as the gym, they froze my membership. I still pay, but they said they'd add the months back on at the end. But right now, I can barely lift 10lb dumbbells above my head. I have lost almost all of my strength and it's 24/7. None of my symptoms seem to get better during the day, they just get worse as I work too much. I have to learn how to relax and I have to learn how to rest. My entire life is turned upside down and I can't be running 1000 mph anymore, but as of now I am still working myself from about 5am to 6pm a night. I am self-employed and it's a lot of computer work, but also retail and moving boxes, etc. I would give ANYTHING to have normal vision again. The swallowing and vision are the issues that scare me the most.