I need to know. I am getting worse. Weaker most all of the time. Been through all kinds of medicines. Imuran, didn't work, prednisone= only taking 10 mg every other day, try taking mestinon= doesn't seem to work for me.
Now taking Methotrexate, and I don't think it is working. Is life with Myasthenia a constant up and down rollercoaster? You do something, you have to rest. My rest time is a lot more than my doing time. Does this ever get better?

Hi Barbara, I sure don't claim to be an expert on MG but from what I have read and my own experiences it seems to be a very unpredictable disease. Stress, type of work, and age perhaps all seem to influence it as well. I was only dx about 3 months ago so still trying to figure out whats the game plan. I take 60mg of mestinon 3x a day and not sure how much it really helps. I don't have the shakes or tremors as bad as I did so that's a positive - however I have spells almost ea day of fatigue and shortness of breath - so far its manageable but some days its a challenge to do my job well. Thankfully I can sit back for a few minutes occasionally when I need to and rest for 15 min or so...
Took a 20 min walk after work today for an example and had gone only about 3 or 4 minutes and a sudden weakness hit me feeling like my legs were getting very weak - I pushed on and made the 20 minutes but it was determination that pushed me on. Excersice can leave you weaker but I don't think it really does any harm and hopefully helps a bit with weight mgmt and muscle strength even thought you may feel tired..?
How long have you known you have MG?
Randy

I have been diagnosed since February of 2009.

Hi Barbara,
Sorry to hear you are having a rough time right now. MG can be unpredictable from person to person and day to day but once you find a treatment plan that works for you it can get better. I've had MG since 1995 and am now on Mestinon, Cellcept and monthly IVIG.

Hang in there. If you have a Neurologist who is willing to keep working with you to find out what treatment combination is best for you then that is half the battle. The other half is trying to find the patience to wait it out until you do find what that treatment plan is.

When do you see your Neurologist again?

You are in my thoughts and prayers

Shari

I do hate to say that is how it is but the good thing is that ive felt tht mine has moved in a cycle so when its really bad it means you might be on the verge of a bounce back. when u find the right treatment for you then you might be able to enjoy a little more stability

I don't know if this is how it is with you, but I had to get really weak before I was a candidate for IVIG. Have you had IVIG or plasmapheresis yet? These treatments do wonders for some people.

Abby

Im one of these people in my opinion if your neuro and your insurance sign off on it then go for it cuz it helped me a lot i take like 1 60 mg mestinon a day right now with my usual 50 mg of pred but i used to have to take 2 of the 180 mg timespan a day so im basically taking 1/6 of the mestinon since ive started using ivig

Yes, this is the way this illness is. Or in more formal terms- the hallmark of myasthenia is fluctuative fatiguable muscle weakness.
Does it ever get better? yes, if you are in remission.
will you be in remission? that depends on many factors. the most important of them, in my opinion, is luck.
Will you be able to live with it better, even if you are not in remission? probably yes, this depends very much on you, those around you, and your treating physicians.

finding the right treatment can be very frustrating. My husband 's symptoms are limited to his eyes.. he had a thymectomy 2 years ago...mestinon does not seem to help alot (but maybe it does more than we think). dr started him on azathioprine last october....had total relief of symptoms after 1 week but then had a reaction to the azathioprine so had to come off. started cell cept but never got the relief he got with azathioprine but doing pretty good till the dr tried weaning him off prednisone. basically went back to square one and never has totally rebounded. we just keep praying for that miracle

I was diagnosed with MG in 1984 at the age of 42. It was doctor to doctor to doctor. I was told I didn't have MG because I have long hair. "Well, everyone knows how much is required to take care of long hair and if you've that kind of energy, you can't have MG." Walked out on that one! Another told me it was "empty nest syndrome" because my younger son had left for college. I had plans for when the nest was empty and this was preventing me from accomplishing those things. Good grief! I was told it was my imagination - yep, doctor to doctor to doctor. Used up all the sick leave from work and more.

Took Mestinon and overdosed on the "normal" dosage - was in ER with them trying to give me more! I insisted on having atropine available before they did anything and it was needed! Was given prednisone to counter the effects which put on 30 lbs in 3 months. This in a person that never gained an ounce and I ate whatever I wanted. I was told that I just wasn't paying attention to what I ate, thus the weight gain. I took myself off of it and lost 20 of the 30 lbs and had to watch what I ate afterwards - it apparently changed my metabolism. Went to Prostigmin and that had problems on a quarter of the normal dosage. Finally my GP put me on mytelase - the first medication used for MG - at a quarter of the adult dosage. Lovely! Have been there ever since. Because I had no tumor and I test negative for the one MG antibody they can test for (there are more), I fall in that 15% or so that have all the symptoms but negative test results.

All my voluntary muscles are involved - I have to be careful what I eat - not fun to get choked when living alone! If it requires much chewing, my jaws get too tired to finish the meal. Sometimes I have to lie down an hour before fixing a meal so I can eat. Obviously social occasions requiring food (which most do) are a problem. I generally eat before hand and sip on a glass of tea or water. If I do too much, I can fall and I can't get back up without something to hold on to. Needless to say I do use a cane.

When I was first diagnosed, I wrote the people in the MG forum (no internet back then). The answer I got from a couple in Albuquerque was this: "On a good day you do what you can. On a bad day, you read." That was no solution! I wanted to get some real answers that would help me deal with this. Over time I found this was the wisest reply I got.

I'm now 68, live alone, use a cane, and have learned to budget my efforts. Is it important? Does it have to be done now? Can it wait? I avoid any stressful situation I can (not all can be avoided). This involves anything emotional - funerals, weddings (unless it's my children!), movies, tv shows, etc. Anything emotional will pull energy from you faster than you can imagine. I avoid talking for any length of time.

I put in the 15 minutes of housework to rest for 30 minutes. At the end of the day, I've accomplished quite a bit. At home I hand quilt, cross-stitch, work on the computer (I've worked out an agreement with a publisher to put manuscripts into publishing format), and read. For a social life I'm a member of the Daughter of the Republic of Texas with my cousins and I served six years on our local Appraisal Review Board. I now have, in addition to my two sons, five grandchildren (twins less than a month old!), and a great-granddaughter.

This is a bit long but hopefully there'll be a nugget somewhere that may help someone else. I've had this now for 27 years. I found the oil fields where I lived made the weakness worse. I had to retire at 48 and for the next five years was in a wheelchair. Leaving that area for a two week vacation was the best thing that happened to me as I found I could get around with a cane. I moved! I'd go back to visit and found that more than three days put me at risk again. Interestingly, at that time there were seven of us with MG in a town of about 20,000.

Everyone is different. Each doctor is different. What works for one won't for another. Each day is different and sometimes each hour is different. It is very frustrating. The one constant I've found among those that deal with it more effectively is a positive attitude and the ability to laugh. When you drop a bowl of soup on the floor because your fingers simply let go, and you sigh and reach for the cleaning supplies, rather than crying or screaming, you know you're own your way to coping. You have trouble making any long range plans - and that includes making plans to be somewhere later in the day. It's an hour's drive to the town where my doctor and my children live. I rest the day before, go to the appointment, come home and rest, and generally the next day as well. I generally either visit for an hour or two at my son's home or I spend the night. And, yes, this is a difficult situation for the family as well. Obviously the more understanding they are, the easier it is for the individual with MG.

I've now been diagnosed with arthritis as well as CMC arthritis, osteoporosis, and most recently low thyroid. This is my biggest problem to date as I've put on weight. The more I weigh, the more the muscles have to work to move me around. I can't exercise as recommended for this condition. However, I haven't fought MG for all these years to have this stop me. One way or another I will deal with it too. After all, I have a closet full of clothes in my "old" size and I can't afford to buy more!!