Originally Posted by TXGayle (Post 773306)

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!!

Originally Posted by BARBARA356 (Post 771027)

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?

Originally Posted by Christel Jackson (Post 776552)

Have you ever tried to balance your hormones? I know that my MG is directly and drastically related to my hormone levels. I am now trying a natural progesterone cream. I'm sick and tired of random doctors who actually cause flare-ups for me, and dangerous meds with horrible side affects. I'm reading a book about hormones and using the cream that is referenced and am hopefull for a break in the flare-up department.

Christel

Originally Posted by Juanitad (Post 778114)

Unfortunately, yes. It takes a while to figure out what works for you and activity definitely makes a difference in how much mestinon you need. If I am trying to do more physial activity, I need more mestinon (as much as 60 mg every 3 hours) If I'm not doing much, I can go as long as 5 hours with the mestinon. I can't take it more than every 3 hours because it affects my gi tract too much and I end up with the mess-tinon trots (sorry to be gross, but that's what they are!)

It can take a while to get some kind of balance, so hang in there and come here to ask questions - great learning site!