Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi!
I am a 38 year old woman who has finally been diagnosed with MG! I have had typical ocular issues for three years. Generalized weakness that was very gradual and I did not realize how bad it was until the mestinon gave me back my strength.
Waiting right now for a scan to eliminate thymoma and a second positive ACHR antibody to start steroids.
Ten years ago, I experienced what was diagnosed as partial Guillain Barré. Extreme weakness, could not hold up my head or arms and respiratory failure. I was treated with several rounds of IVIG and fully recuperated. I wonder if this was a myasthenic crisis?
The neuro says no, but he is very hard to work with, he seems to think any young woman who has intermittent issues has anxiety. He diagnosed me with functionnal disorder but said he was asking bloodwork anyway and it would be negative. When the ACHR was not, he said it was a false positive but he would trial mestinon anyway. Surprise, it is amazing amazing amazing and he finally believes I have MG. To be fair, I did not realize how bad I was and did not consult enough or push for answers.
Anyway, he says my paralysis ten years ago was viral because there were white blood cells in my lumbar punctures. Does anyone know if Guillain-Barre can turn into chronic MG? Could a virus still be hiding in my nerves or muscles and my body is trying to eliminate it by destroying itself? Kinda like shingles that is chicken pox reactivating? I am just curious to know your thoughts, especially if you had MG crisis. Thanks!
Many of us have been diagnosed with mental problems ( depression, anxiety, etc.,) before we get the actual MG diagnosis and so we know what you have experienced, until finally someone or some symptom convinced a doctor to make an actual MG test and then found us positive. After trying 3 neuros, I found a good neuro who treated many MG patients and one who was very good to work with me. That made treatment easier.
Sounds like you have a doctor who is lacking in some of what we would like to have in our care. To live with MG we need to have a neurologist who is experienced in treating MG, so your first step is to make sure that you find one. Very few neurologists have that expertise, but you really want to get someone who not only treats MG, but one you can work with and trust as most of us will have treatment the rest of our lives. Mostly we do OK after we figure out which immune suppression treatment does work for us, and that is not always easy nor fast. So having an expert neurologist who you can work with is very important.
And by the way, it is not necessary to re-test for MG as one ACHR positive test is clearly enough for diagnosis along with symptoms. Your neuro doesn't recognize that, and seems to prefers to keep his own opinion rather than believe the test. That makes me think your doctor is likely to be difficult to deal with in the future! And by the way, if the ACHR test or other blood test is positive, you do not need sfemg tests or other tests, the blood test is enough. The other tests are either to make profit for the system, or to give the doctor an excuse to delay treatment or find some way to confirm his non-diagnosis. A positive blood test should be followed by immediately beginning treatment as most of us who crash, do it at the beginning due to delayed diagnosis or delayed treatment after diagnosis. My crisis and hospitailization was due to under-treatment by a neuro who didn't normally treat MG. Taking 6 mestinon per day vs 3 got me out of the hospital and onto prednisone.
I worked with doctors most of my life as a medical researcher. I found they are like normal people, some good, some indifferent, some terrible. I figured since it was me that was their customer, and their pay came from treating me, I would get my full value from them. I tried to be very efficient in my side of it, explaining briefly my symptoms, problems having it all on a typewritten list with a specific set of goals for each appointment that I wanted met.
When we had the diagnosis, and I was very close to crisis, I knew the options from having read widely and asked here on this forum, so I was prepared. I wanted fast results, but not IVIG or PLEX (blood additives or cleaning), and so prednisone with lots of mestinon was a choice I thought would work for the start. And it did after initially getting prescriptions for too little of each, we went to much more and in maybe 4-5 months I was past MG symptoms and worrying about prednisone tapering.
The first year is the worst for most of us. Then we get a treatment plan and with persistence, self-awareness, and a good neuro, most of us do well, and get on with living an altered, but decent life and MG becomes like diabetes, something to treat and work around, but not taking over our lives.
As to your question about GB vs MG; both are caused by our white blood cells manufacturing antibodies that attack part of our body. GB is somewhat like a type of MG called MuSK in that the attack is on the nerves. ACHR MG is an attack past the nerves on the muscle receptors (nerve endings send chemical messages to muscle receptors in the neuro-muscular junction).
Many of us with MG have other auto-immune diseases like thyroid problems.
Some MG comes directly from a problem thymus gland and so it is removed. A study found that in ACHR + MG, removing the thymus helped whether or not it was normal. So one of the treatments is removal of that gland. It does not cure MG, but makes it more likely for remission or lower levels of treatment.
Prednisone is usually the first step in treatment for most of us. If one starts for a week or two at low doses (20 mg per day or less) and then ramps it up to high doses, it can push away the MG symptoms in a month to several months. However, many of us find the side effects rather annoying and so take it at high doses until we feel decent, then taper it to as low a dose as we can get by with. It takes weeks for a change in dose to show up, so everything is in slow motion.
When first diagnosed, I came to this forum and read old posts; went to myathenia.org and to mayo clinic and other reputable websites to learn everything I could about MG, understanding I would be living with it the rest of my life, and wanting to know everything I could about it. That helped me in dealing with my doctor as I came in knowing treatment options, side effects, likely scenarios etc. It gave me some feeling of control and I could talk to my doctor at a level that she understood that I wanted to be involved in my treatment and the "why" of every step we took.
Good Luck
Russ
Yes, google has been a great help in learning about myasthenia.
As for the neuro, I don't think he is really incompetent. He has done all the correct things, just with a kinda debasing attitude of telling me it would be negative. The last check-up, where he examined me post mestinon, I sensed that his attitude changed because it was impossible for him not to see my eyes were both open and focusing. Thank goodness I am a "typical" case with positive Achr and respond to mestinon. It would be very difficult for me to change neuro because I live in a rural area and it is a two hour drive to get to a bigger teaching hospital. I will do it if my current neuro proves incompetent. But as long as he prescribes the bloodtests and meds I need, I don't really care about his arrogant attitude. I've worked in public relations for twenty years, I have a pretty thick skin. I don't need him to be my friend just do his job. ;)
I am hoping to find the proper doses of mestinon for me soon. Right now it's lots of up and down on 60 mg 5 times a day. I think in the morning it is too much and not enough at night, I am playing around a bit with the times to avoid crashing at work and will try 30 mg probably in the morning. I find that my activity level really impacts how the med effects me; more active, less effect. And I think I am crashing at night, waking up in sweats multiple times, I took an extra 30 mg at 2am last night and that stopped it. Any tips on dosing mestinon?
Thanks!
When I got up in the morning, I took 1 mestinon and 2 loperimide (Imodium). That helped me with the digestive problems. I always took mestinon with a little food -- crackers, or something. When I was at my worst (before prednisone worked) I took a 60 mg pill about every 4 hours and if I wanted to be more active I took that much ever 2 hours for about half a day. Eventually I got used to mestinon and most of the side effects were tolerable. Mestinon made it so my first 5 months were tolerable and I could be somewhat active. My wife was beginning cancer treatment and I was her care giver and needed to be functional and get MG under control fast, but without the inconvenience of IVIG or PLEX. Prednisone with mestinon were the fastest way, said my neuro.
Mestinon never got my double vision to go away, although it helped some with that.
The side effects of mestinon for me were the digestive problems which gradually got better and were not so bad with food and Imodium. Sometimes I got muscle twitches -- usually if I took a little more than I should. And the worst were at night when I got really bad leg, calf, and foot cramps.
I finally quit taking mestinon about 6 pm and that helped some with the cramps. I also did bunch of leg, calf, foot stretching by doing wall pushups. That was standing a foot or so away from a wall, and keeping my legs straight, lean to the wall stretching the calf, leg and foot muscles, and going forward and backward like a pushup.
At the same time I was diagnosed with MG, I also was diagnosed with sleep apnea (it seems that some of us have both, or maybe breathing problems due to the MG). Anyway, I had breathing problems at first and when I felt panicky, I could sit down, hook up the CPAP, and let it help me breath for 10 minutes and then I felt OK again. And the machine made it so I could sleep overnight without mestinon.
Eventually when prednisone started working, I found Mestinon just made me twitchy and didn't help anymore. My neuro said the goal was to take just enough prednisone (or other immune suppressant) so I only needed mestinon for an occasional boost, or if I had a flare. Prednisone was supposed to allow me normal functioning most of the time.
As I went into remission and was able to taper fully off of prednisone, I occasionally took a Mestinon to see if it made me feel better. As it only made me twitchy, I knew I was OK.
Mestinon has another side effect -- profuse sweating. I used to carry an extra shirt with me in the car while on it so if I did something in summer and got a wringing wet shirt (often) I could change. Something about stimulating the sweat glands and saliva etc. I had to be careful not to drool with on heavy doses. I kept "wet ones", deoderant, towels too in my car as I had to do these washups often.
My neuro gave me a prescription for time-release version called "timespan." I tried it but as it was more expensive (2012) and didn't give me fine control like taking the regular, I didn't use it after a trial. I thought maybe it would be good for overnight, but, for me, delivering a steady dose was not needed so much after the first month. I suppose prednisone was working by that time.
The first problem I had was when I got prescribed 3 per day, then we ramped up to 6-8 per day, was keeping the supply on hand. My insurance gave me 30 day amounts or 100 day amounts and so if we changed the dose, I had to worry about running out as we changed. So my neuro gave me the take as needed up to 8 per day so my prescription was 8 per day even though I didn't take that most of the time.
One feels like a real drug addict when running short of pills you know you need to get through the next day.
Good Luck
Russ
Have a nice week!
I am 64 yrs old had my sterrnal Thymectomy 4 months ago had my follow up visit with my Neurologist
No more double vision and getting my strength back
Cut my medicine in half
Thank you University of Kansas medical team and staff you are on the cutting edge for MG
Hope you get yours in remission prayers
Thank you for sharing your experience with me. I am waiting for a scan right now to see if my thymus has issues. Possibly it will be removed even if normal but it would be less urgent. As a single mom, having major surgery like this requires a lot of planning.
Fingers crossed, I would definately hope I improve like you!
I was started on prednisone for myasthenia. One week later I was in intensive care with myasthenic crisis respiratory failure. Initiating steroids is a known factor for causing myasthenic crisis.
I received four rounds of IVIG, and am now back home. Much weaker but not dead!
The symptoms were identical as my supposed guillain barré ten years ago. There is no doubt now that the guillain barré was actually myasthenic crisis, and how the illness began in me. I had no symptoms prior. And because the treatment is the same (IVIG) I responded to it.
So, mystery solved for me! ;)