[busybusy]

Before I was diagnosed with MG, I could do an activity or go away for a weekend and it would wear me out. It would take me days to get over it. I am a little confused now that I have been diagnosed and reading the forums. Are there different levels for MG. For example, some talk about how hot weather affects them and cold weather makes them feel better. I have been reading about MG crisis. What exactly brings them on or does everyone have one at some time or another. I guess in the past I chalked everything up to exhaustion and now I really don't know what to do, how to feel, or what to expect. I guess I am more afraid of doing things and pushing ahead or waiting for some symptom to appear. I am confused on how I hear that it comes and goes. I have read as many articles as I can read but nothing sticks very long. Exactly, how do you know when it comes and when it goes. I know my breathing has improved and the drooling at night has improved, and the pain in my legs have improved somewhat. Do all the symptomes completely disappear and one day you begin to feel tired again. Am I reading too much into everything and trying to figure out too much. I enjoy these forums and have been educated quite a bit and thankful for all that I have learned. Maybe I should forget about MG and just pretend it isn't there. Maybe I am thinking about it too much. Struggling with answers. busybusy

[elanor]

I know exactly how you feel. I was diagnosed about a year and a half ago and am still wondering how much of it is MG, how much is fibromyalgia, how much is migraines, and how much could possible be Graves Opthamology (which an MG specialists I saw yesterday suggested).

The specialist is even redoing the initial bloodwork because she says it was just the modulating that was positive and not the binding. HUH! So now she leaves me with the thought that it might not even be MG although 3 other Dr.'s have agreed that it is. It feels like a merry-go-round.

[DesertFlower]

MG is confusing, it comes and goes.

For me there are triggers that make it worse such as
-cold weather (both winters with MG have not been so good for me)
-sudden heat like sitting near a space heater/furnace vent in a cold room
(although hot weather, above about 80 degrees and up to 105 degrees, makes my MG better)
-processed food
-chemical exposures such as perfume or pesticides
-any activity, especially repetitive ones
-stress (the worst one)
and I could go on with the list of things I have found to trigger MG. I am keeping a record, which is the best way to identify these things. The list continues to grow, mostly with specific foods, places and people to avoid.

But sometimes my MG gets worse and I can't figure out why. I wake up one morning and have a hard time getting out of bed and difficulty brushing my teeth and hair and there were no triggers that I know of.

As for what to expect, it seems that everyone is different and it is best to keep your own record so you can know what to avoid. This has been important for me because the few times I have overdone it on the things that trigger symptoms I get really bad for 3 to 4 weeks and that is miserable. I want to avoid that situation when I can.

My MG symptoms have never completely disappeared but I had two times during last summer when they almost disappeared and I had to cut my Mestinon back to 15 mg per day. Those were wonderful days! I am now looking forward to next summer since that seems to be the only time when good days are possible. These cold days make me constantly weak and if I turn up the furnace higher so I can be warm my legs give out on me...I can't figure out what to do with the heating situation, I'm either cold and weak or comfortable yet collapsing.

I hope any of my rambling helps.

[AnnieB3]

Busybusy, MG can be very confusing. The most important thing is to listen to your body. You will instinctively know, now or after awhile of having it, when you need to stop doing anything or when it's time to call your doctor or go to the ER.

Technically speaking, the extremes of cold and heat both make MG worse. They increase the activity of the enzyme acetylcholinesterase (AChE) whose job it is to clean up after acetylcholine does it's job of making your muscles strong. It's a built in checks and balances system in the body so "normal" people don't get too much acetylcholine. Not unlike many other "balances" in the body like carbon dioxide/oxygen or water/antidiuretic hormone, etc. If you get too hot and have too much of that enzyme, you don't get enough acetylcholine and get weaker.

Mestinon is a cholinesterase inhibitor (CI). It inhibits that enzyme from doing its job, so that we MGers can keep what acetylcholine we have in our neuromuscular junction longer and use more of it. Think of a crowded airport. All of those people will probably get through to the gates if there are a few security checkpoints open. If there is only one open, it'll take longer. Our muscle receptors are like those security gates; the antibodies attack them so we have fewer of them for them for the acetylcholine to get through and it takes "longer" for it to get to our muscles.

Sorry, I don't mean to be talking down to you! I think it's important to know exactly what's going on with our disease and why. It helps to know what it "does" to you.

This is the area where no one has answers because it's impossible to predict how MG will affect you! If you go out one day, MG may get a bit worse that day and in the next couple of days. If you go out and run errands, for example, two days in a row, MG may get increasingly worse in the next couple of days. If you have gotten yourself to a point where you are much weaker and insist on doing something, your MG will get "exponentially" weaker, like the Richter Scale for earthquakes. A myasthenic crisis, only for the sake of an example, is when you get to a 6.0 or higher.

What are the signs of an MG crisis? Well, if you don't recover muscle strength when you rest, that's a big sign that you need to call your neuro. I know I'm headed downhill when nothing will pop up my eyelids/eyebrows/face. If you have sudden weakness or shortness of breath, that's a huge warning sign that you need to STOP what you are doing, rest and call your doctor. The muscles at that point have run out of the necessary acetylcholine to continue doing what you're doing . . . like living. In fact, if you get so bad that you are very weak, can't breathe in or out well or can't swallow, even more than a couple of times, you need to dial 911. No "discussions" with family as to what to do. You can't wait with MG, it can go further downhill very quickly. And, not to scare you, but it can get to the point where you can't move or talk - or breathe. So you have to pay attention to your body and all the clues it gives you about getting worse.

Elanor, Let me say that I have modulating antibodies only and clearly have MG. Don't listen to that one doctor. 3 - 4%, or at least that they've studied, have ONLY modulating antibodies. Some MGers ONLY have binding and not modulating.

Susan has given you great ideas of how to maximize your health so that you can avoid getting worse. Sleep is a big help to MG. Heat, at least for me, is the number one trigger of my MG. Sleep is next, followed by any kind of infection. If your MG is not doing well, anything can send it downhill fast. So always call your primary doctor for help with things like an infection right away.

I've had MG long enough now (since birth - 52 years) to know how it "acts" but that doesn't mean MG can't surprise you. You might be doing activities and be fine for a few days, so you think you can still keep doing what you want. Wrong. MG will end up making you worse, even if you are a lot of meds. Activity makes MG worse because your muscles are fatigable. How much activity and how fatigable are the question marks that make a "newbie" go nuts. It still makes me go nuts. I did some cooking for Thanksgiving and crashed so bad three days later that I wasn't sure whether I was headed for a crisis or not. A couple days of rest and behaving myself and I was better. Though not "back to my normal" better. My MG is still on edge. The worse you get with MG, the longer it takes to get back to your normal.

Mestinon helps and may make you feel great but it's only a "helper" drug. Imuran, steroids, IVIG, plasmapheresis, etc. all help but they may not be enough either. You HAVE TO alternate activity with rest/sleep in order to keep your MG at an even keel. Maintenance is key with MG. Think of biking. You'd rather bike on flat ground than over steep hills, right? Pushing the envelope of MG gives you higher and higher "hills" to deal with. Not to mention that the higher the hill, the bigger the downfall.

I know I'm still bad this week, for example, because my body "put me to sleep" for a few hours after running a couple of errands. Normally, I can sit or lie down for a very short time and be better. Not superwoman better, just good enough to keep going. I'm not normally "tired," meaning sleepy tired. When I get tired like that, I know it's my MG. Of course, there can be other medical reasons for it but when it comes and goes like that, it's probably the MG.

Don't push MG. Please. You do NOT want to end up in an MG crisis. It's very scary. It's not morbid either to "prepare" for the worst because with MG it can get to the point of an MG crisis and it's better to be prepared for one. Some MGers lose their voice a lot. If you are like that, it's a good idea to have a tape recording of a calm explanation like "I am having an MG crisis. This is a recording because I can't talk right now. Please send an ambulance to . . ." I always make sure the person I'm living with knows if I'm worse. Not to alarm them but so they know if they get a call in the middle of the night, it's probably me needing help!

Set yourself up for success with MG. Make your life around your home easier. Put chairs or stools everywhere, including the shower. Why use your muscles too much if you don't have to? There are a lot of past posts dealing with these topics.

My arms are out of energy, so I'll stop now. You have to be your best advocate with MG. Trust your instincts. None of this second guessing yourself, like you did at the end of your post! Take some time to get used to all of this.

Annie

[craftyRCC]

Well said everyone!!!!

Rachel

[Jones3251]

I was diagnosed in 2003 as a general case so I was affected from the top of my head to the bottom of my feet. I lost my License, fell many times, double vision, no one except my wife could understand me. It took 32 months for Imuran to help, I have taken as much as 720 mg of mestinon a day, also on predisone for a yr. At one time I lost 45 lbs in 30 days. I let myself go and my weight slowly increased to 360 lb. Blood Pressure upto 195/95. Heat dosen't bother me but cold does. I went for a walk one day and the last 50 feet took me 30 minutes to get back in the house.

That was when I felt sorry for my self. I had to retire and I nothing to do but rest.

Now this is what I believe. You want to live with Myasthenia then live you life right. You need to change your eating habits and eat a very nutrious diet. You need to exercise. You need to make sure that you have the proper vitamins and minerals in your body. AS for the drugs that you take Mestinon, Imuran, etc I now control my own dosages. If you reduce mestinon you may have some symptoms for a few days until your body adjusts.

Now this is me today. I am taking 60 mg mestinon and 25mg imuran per day. I am a Tai Chi / Qigong instructor, I walk 2 - 3 miles @ 4mph each day. I practice Tai Chi everyday. My blood presure is 125/67, weight is 275 lb and dropping slowly. I will stop taking all of these drugs soon.

Remember this is my opinion and I am not a doctor. But I have spoke to others MG patients that have had the same results with better diet and exercise.
I have some page that you should read but I can send the links.

[busybusy]

Originally Posted by AnnieB3

Busybusy, MG can be very confusing. The most important thing is to listen to your body. You will instinctively know, now or after awhile of having it, when you need to stop doing anything or when it's time to call your doctor or go to the ER.

Technically speaking, the extremes of cold and heat both make MG worse. They increase the activity of the enzyme acetylcholinesterase (AChE) whose job it is to clean up after acetylcholine does it's job of making your muscles strong. It's a built in checks and balances system in the body so "normal" people don't get too much acetylcholine. Not unlike many other "balances" in the body like carbon dioxide/oxygen or water/antidiuretic hormone, etc. If you get too hot and have too much of that enzyme, you don't get enough acetylcholine and get weaker.

Mestinon is a cholinesterase inhibitor (CI). It inhibits that enzyme from doing its job, so that we MGers can keep what acetylcholine we have in our neuromuscular junction longer and use more of it. Think of a crowded airport. All of those people will probably get through to the gates if there are a few security checkpoints open. If there is only one open, it'll take longer. Our muscle receptors are like those security gates; the antibodies attack them so we have fewer of them for them for the acetylcholine to get through and it takes "longer" for it to get to our muscles.

Sorry, I don't mean to be talking down to you! I think it's important to know exactly what's going on with our disease and why. It helps to know what it "does" to you.

This is the area where no one has answers because it's impossible to predict how MG will affect you! If you go out one day, MG may get a bit worse that day and in the next couple of days. If you go out and run errands, for example, two days in a row, MG may get increasingly worse in the next couple of days. If you have gotten yourself to a point where you are much weaker and insist on doing something, your MG will get "exponentially" weaker, like the Richter Scale for earthquakes. A myasthenic crisis, only for the sake of an example, is when you get to a 6.0 or higher.

What are the signs of an MG crisis? Well, if you don't recover muscle strength when you rest, that's a big sign that you need to call your neuro. I know I'm headed downhill when nothing will pop up my eyelids/eyebrows/face. If you have sudden weakness or shortness of breath, that's a huge warning sign that you need to STOP what you are doing, rest and call your doctor. The muscles at that point have run out of the necessary acetylcholine to continue doing what you're doing . . . like living. In fact, if you get so bad that you are very weak, can't breathe in or out well or can't swallow, even more than a couple of times, you need to dial 911. No "discussions" with family as to what to do. You can't wait with MG, it can go further downhill very quickly. And, not to scare you, but it can get to the point where you can't move or talk - or breathe. So you have to pay attention to your body and all the clues it gives you about getting worse.

Elanor, Let me say that I have modulating antibodies only and clearly have MG. Don't listen to that one doctor. 3 - 4%, or at least that they've studied, have ONLY modulating antibodies. Some MGers ONLY have binding and not modulating.

Susan has given you great ideas of how to maximize your health so that you can avoid getting worse. Sleep is a big help to MG. Heat, at least for me, is the number one trigger of my MG. Sleep is next, followed by any kind of infection. If your MG is not doing well, anything can send it downhill fast. So always call your primary doctor for help with things like an infection right away.

I've had MG long enough now (since birth - 52 years) to know how it "acts" but that doesn't mean MG can't surprise you. You might be doing activities and be fine for a few days, so you think you can still keep doing what you want. Wrong. MG will end up making you worse, even if you are a lot of meds. Activity makes MG worse because your muscles are fatigable. How much activity and how fatigable are the question marks that make a "newbie" go nuts. It still makes me go nuts. I did some cooking for Thanksgiving and crashed so bad three days later that I wasn't sure whether I was headed for a crisis or not. A couple days of rest and behaving myself and I was better. Though not "back to my normal" better. My MG is still on edge. The worse you get with MG, the longer it takes to get back to your normal.

Mestinon helps and may make you feel great but it's only a "helper" drug. Imuran, steroids, IVIG, plasmapheresis, etc. all help but they may not be enough either. You HAVE TO alternate activity with rest/sleep in order to keep your MG at an even keel. Maintenance is key with MG. Think of biking. You'd rather bike on flat ground than over steep hills, right? Pushing the envelope of MG gives you higher and higher "hills" to deal with. Not to mention that the higher the hill, the bigger the downfall.

I know I'm still bad this week, for example, because my body "put me to sleep" for a few hours after running a couple of errands. Normally, I can sit or lie down for a very short time and be better. Not superwoman better, just good enough to keep going. I'm not normally "tired," meaning sleepy tired. When I get tired like that, I know it's my MG. Of course, there can be other medical reasons for it but when it comes and goes like that, it's probably the MG.

Don't push MG. Please. You do NOT want to end up in an MG crisis. It's very scary. It's not morbid either to "prepare" for the worst because with MG it can get to the point of an MG crisis and it's better to be prepared for one. Some MGers lose their voice a lot. If you are like that, it's a good idea to have a tape recording of a calm explanation like "I am having an MG crisis. This is a recording because I can't talk right now. Please send an ambulance to . . ." I always make sure the person I'm living with knows if I'm worse. Not to alarm them but so they know if they get a call in the middle of the night, it's probably me needing help!

Set yourself up for success with MG. Make your life around your home easier. Put chairs or stools everywhere, including the shower. Why use your muscles too much if you don't have to? There are a lot of past posts dealing with these topics.

My arms are out of energy, so I'll stop now. You have to be your best advocate with MG. Trust your instincts. None of this second guessing yourself, like you did at the end of your post! Take some time to get used to all of this.

Annie

Thanks Annie. I think I will try to print this and keep it with me at all times when I begin to have doubts again. I know my limits and I have known for some time before diagnosis what these limits were. But then, I kept pushing. I usually go back to this forum when it first started and read everything I can from beginning to end. Only 1/4 way through. I usually start all over from time to time before I make it much further. I understand everything you said. I also did a lot of cooking for Thanksgiving and on Friday and Saturday, I laid around all day because I felt like a mac truck ran over me. On Sunday, I was able to do but just did not feel good at all. I guess what I have a hard time with is when you talk to others, they say they are also tired and wiped out and this gets one to wondering whether it was their MG or not since others say the same. Thank you again. You sound like a very knowlegeable person. Thanks to all who offers help and cares so much about others. This forum is my security blanket. busybusy

[AnnieB3]

BB, Sorry, I just felt like abbreviating. I've had MG my whole life. Wasn't diagnosed until age 42. Between that, the hellish ordeal with neuros and my insatiable need to learn, I simply know a little more. There are a lot of very knowledgeable people here. Read what Alice wrote to Abby/Stellatum in her latest post.

Pushing MG is not a good idea. I still do it on occasion but not like I did in 2005 when I ended up in a crisis. Alice really describes it well. You don't know what MG will do, it's impossible to completely predict it. There have been times when I hadn't even been doing much and it's gotten worse. So if you can go with the flow of this odd disease, the better off you'll be.

When "normal" people do things, yes, they can get RELATIVELY tired or worn out. They don't, however, have a lack of "muscle gas" getting to their muscles and do not get WEAK. There are 640 skeletal muscles. At any time, one or many more of them can be weak. I think showing a horrific droopy face photo to family or friends is a good way for them to "get it." I have this really awful one of me where I look like a basset hound. Of course, then you have to expect them to "worry" about you all of the time. Their "normal" is not our "normal" and their "worn out" won't win them a trip in an ambulance to the ER!

Take it easy and take some time to let it all sink in.

Annie

Here's an excerpt from my not as of yet published book about doctoring. I hope this helps explain things to your family.

Have you ever tried taking a road trip with only a gallon of gas in your car? You may make it to where you’re going but you may not make it back home again. That is kind of what a day with MG is like. Acetylcholine is the gas that makes everyone’s muscles work well and stay strong. Most “normal” people have a full tank of muscle gas all day long. If you have MG, however, you don’t really know how much gas you have for any particular day. Or for any of the 640 skeletal muscles. That muscle energy could run out at any time during the day and your muscles won’t “go” any more. The only way to get muscles stronger again is to rest and/or take pretty awful drugs like steroids. Every activity, such as walking, talking, eating, laughing, swallowing, smiling, lifting and breathing, is adversely affected by this lack of muscle fuel. Imagine eating a meal and having to stop halfway through because your swallowing muscles are too weak to work anymore. That’s a glimpse of what life is like with MG.

[busybusy]

I like Alice's advice too. She has a lot of insight, and I print off things she has said also. I want everyone to know that I value everyone's opinion and take all that is said to heart. I guess some days something may strike me and I don't won't to forget it, so I print it. I let my husband read your response to help him understand more because you explained it better than I could. No one has sat him or me down to explain anything. Everything I have learned has been from this site. The only information I was given is take your medicine. You can live a normal life. I now realize there are so many degrees in MG and really nothing is standard. As long as I have this forum to go to, I feel I can run this race and be a winner. Maybe not first place but at least cross the finish line. Thanks to everyone.

[Jones3251]

*edit*
What is it you’re trying to accomplish - maximum relief from Myasthenia or just how to deal with it, it makes a difference. Also no matter what you do will give you different results than someone else. I read and researched everything I could and I found that 99% of what I read was talking about the symptoms. How the nerve and muscles are affected. But until I start looking how to stop the symptom I was locked into an endless cycle of drugs.
MG is linked to some weakness in your system and trigger by an unrelated event. Mine can be trigger by infection, celiac, obesity and lack of exercise. For many years I lived for the job and my stress was high. I spent 6 yrs. looking for relief. This is what works for me and others that I have spoken to that have followed the same path.

Change your life style.

• Start eating very nutritious meals
• Reduce processed foods to a minimum - none is better
• Get all of the vitamins that you require. (Lecithin 3.5 gm., all of the B vitamins, Fish oil, and Manganese 15 mg, multivitamin and this per day).
• Stop eating all products with Gluten in it for a month to see if you find any relief - forever is better. Then do the same with dairy.
• Reduce your meat in take to 15% - none is better.
• Don't eat processed soup its garbage. Make your own by rendering soup bones. This way you get all of the vitamins and minerals you don't get in prepared soup.
• Reduce your weight
• Reduce your salt intake to 1500 mg per day or less
• If you have high blood pressure take the pills

• The last thing is exercise every day. Start slow and work yourself up.

At the end of the 2nd world war prisoners of war in Singapore were suffering from Myasthenia and after being put on a nutritious diet and vitamin therapy they regain full health. At one time England had so many people with MG it was an epidemic. Again a nutritious diet and vitamin therapy resolved the issue.

Do not have your thymus take out just for the sake of doing it. I have a link to a paper but I can't send it on this forum you would have to email me. jamejone#brktel.on.ca (you have to put the "At" sign)

This is what I do you make up your mind what you are willing to try.

I am a Tai Chi Instructor, I walk 2 - 3 km a day, and I do some strength training and meditate to control stress. So I know how this has worked for me and many others.

I take no Mestinon at the moment and the Imuran is down to 25 mg per day.

I don't know how you will react if you do all of these things I have suggested. This is something you have to find out for yourself.

James