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 there,
I apologise in advance for the long post, but it is my first time on the group and I have quite a number of questions. I have had MuSK MG now for almost 5 years, and unfortunately it is still not really under control, although having gone through numerous ups and downs. My symptoms are mostly breathing issues, swallowing and eyesight, so I'm lucky in that it has not affected my limbs' strength. I've been on azathioprine, but stopped because my white blood cell count fell to dangerous levels, and are now on cyclosporine with no improvement at all (in fact, mestinon intake has worsened to 120mg per day to 8 x 60mg if I'm lucky). I'm currently considered for treatment with Rituximab.
I have a number of questions:
1. Has anyone with MG been struggling with hypoventilation at night and are therefore struggling to get up in the mornings? Rest has absolutely zero impact on my MG, if anything, it makes it worse. If you have, how do you cope with it (other than getting assistance for breathing during the night)?
2. I love exercise enormously, and have been an avid runner and dancer before I got diagnosed. Over the past few years I have still managed to be able to do a few ultra mountain bike events and Xterra triathlons and get to finish in quite competitive times, but this is only when I am feeling at my very best, and unfortunately I would then completely crash thereafter and be out for quite a few months. I have found training to be very beneficial in handling MG though, so I wanted to find out if anyone has been able to do competitive sports with MG and how they handled it? Specifically as I just cannot get up in the mornings. And then obviously the cramping from taking all the Mestinon makes it next to impossible to complete a 1h swimming session.
3. Has anyone taken Rituximab with success? I have been told that MuSK MG patients might respond positively with it? And what are the risks to the treatment?
4. Has anyone succesfully manage their symptoms down by altering diet?
Thanks! I would appreciate any help - unfortunately I know no-one with the disease.
Sorry you are having so many problems. MUSK is often harder to control than regular MG.
I was diagnosed with sleep apnea about the same time as MG (not sure if they were related). I got a CPAP machine, a respironics system 1, the kind that pushes in when you breath in and lets up when to make it easy to breathe out. I used it overnight and sometimes in the day time when my MG was uncontrolled and I was having breathing difficulty. I think, even if you don't have sleep apnea, one of these machines can be very helpful for MG folks with breathing problems. You may not be able to get one via prescription, but they are for sale quite inexpensively on craigslist and other places. Having one of these around kept me from panicking when my breathing got difficult.
2. Although exercise is good to keep muscle tone and helps with MG, we just have to recognize that our condition makes this very difficult. There have been many folks on this forum over the years who came in as runners and athletes, and have had to adjust to something less than they desired. I wasn't one of those, but did a lot of back packing in the mountains and had to give that up for walking instead. I adjusted by buying a nice camera and changing my attitude to thinking about composing photos instead of higher intensity weeklong packing. The common aspect of "over excercise" with MG, is you pay for it long term. Mental and physical adjustment to MG's limitations
are hard, but necessary. If you search this forum for "Elinora" you will find the two year long story of a woman who wanted to run, but MG got in the way. Her MG was a side effect of undiagnosed terminal pancreatic cancer. MG can be a side effect of cancer, so cancer checks are important.
3. Yes, several folks on this forum have taken rituximab with success. You can read about it by doing a site search in google by typing in exactly this whole line
ritux myasthenia site:https://www.dailystrength.org which will give you this result
https://www.google.com/search?q=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&oq=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&aqs=chrome..69i57.16890j0j4&sourceid=chrome&ie=UTF-8
4. Although a balanced diet, plenty of vitamins and good eating is important for health in everyone, over the years of this forum, we have had maybe 2 or 3 folks of the 1000s who have come and gone here actually claim their MG was controlled by diet. The main type of post is "boost your immune system by xxxx diet" which is of course the opposite of what we want to do -- we need to stop our immune system from churning out so many bad antibodies. If there were a diet that cured or controlled MG, somewhere in the 200 years that MG has been acknowledged as a disease, it would have been found and we would all be cured or controlled.
You can search for that too by
diet myasthenia site:https://www.dailystrength.org
which gives
https://www.google.com/search?q=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&oq=ritux+myasthenia+site%3Ahttps%3A%2F%2Fwww.dailystrength.org&aqs=chrome..69i57.16890j0j4&sourceid=chrome&ie=UTF-8#q=diet+myasthenia+site:https://www.dailystrength.org
In the 5 years since I was diagnosed, I have met one person with MG in person. The rest I know from online sharing.
Good Luck Russ
Unfortunately I'm not staying in America - so Craig's list is not really feasible. I think my neurologist's way of managing it is to rather just get me on Rituximab before it deteriorates and before asking for it from the medical aid. So seems like there is no way of managing it currently.
Sorry to hear about having to give up back packing through the mountains :-(
I think I'm still hoping for it to go into remission, thus the tendency to want to exercise and striving to get diet to help with the symptoms and trying to do the most I can from my side to stabilise the disease without pure reliance on just medication (although I recognise that medicine is required).
Good luck on your side too :-)
Russ
Russ