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...
A research study on plasma exchange shows that if one is ACHR+ it is likely to work better than if not. PLEX or TPE is essentially blood filtering -- removing plasma with a machine and then replacing it with other fluids or other plasma.
https://www.neurores.org/index.php/neurores/article/view/510
Another study shows that the placebo response in MG patients about 24%. When research studies are done, one is supposed to control for patients improving because they think the treatment will work -- the placebo effect. This is not always done. So the researchers tested MG patients and found that about 1/4 will feel improvement with a "fake" treatment.
What that tells us is that we need to be aware that when someone tells us a particular treatment, doctor prescribed or not, works for them, there is a 24% chance it is not the treatment, but rather the expectation of the treatment working. I think that is why we hear of so many things that appear to be questionable being touted as treatments. At the same time, the study showed that real treatments improved patients in 67% of the time, so that leaves 1/3 of folks not responding to the particular treatment done in this study. The whole study in in pre-published form, so we can't study the details yet.
https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.26469
And a small study attempting to figure out if a patient with ocular MG will progress to general. Their DNA/RNA test seems to be promising. We know that not everyone with ocular MG progresses into the general, but often full treatment is done on ocular just in case. This may be a way to distinguish.
"This is the first study to describe a potential predictive factor associated with the risk of generalization for patients with OMG. Raised levels (>8) of miR-30e-5p at initial presentation in patients with ocular MG symptoms, give a predictive cut-off for subsequent generalization of 96-100%."
http://www.diva-portal.org/smash/record.jsf?aq2=%5B%5B%5D%5D&c=40&af=%5B%5D&searchType=LIST_LATEST&sortOrder2=title_sort_asc&query=&language=en&pid=diva2%3A1296820&aq=%5B%5B%5D%5D&sf=all&aqe=%5B%5D&sortOrder=author_sort_asc&onlyFullText=false&noOfRows=50&dswid=mainwindow
I have read that some of the MGers who are currently categorized as seronegative are actually ACHR+ but have a low affinity antibody that doesn't show up on the standard antibody assays. It will be interesting to eventually find out if I am one of them. Anyway, PLEX is a godsend for me. Thanks for the link to the article, Russ.
I started on this site in 2012, when first diagnosed with MG and several years later dropped out as I was in remission and then restarted when I thought my MG was coming back and then have been active since. In my first time here, I pushed the scientific research angle on treatment, and undoubtedly got folks who didn't agree bothered that they were challenged when they said diet, lifestyle, alternate medicine etc., was the cure for MG.
I certainly can't take credit or blame for the forum's sudden decline. The reason the forum went from very active to almost inactive was that dailystrength completely redid the user interface. It didn't work very well at first, and folks who were happy with the old forum and couldn't or wouldn't do the new forum, left it in droves and for a time only half dozen folks remained and posts went from many per day to a few a week or less.
I started in again when I saw the posts from folks just diagnosed with MG going unanswered in the new forum, when they were asking basic questions that come with the diagnosis. I remembered when I was first diagnosed, and although the neuro explained it thoroughly to me, I was almost in shock -- was I going to die, could I ever live a decent life? What should I do? And then some folks on this forum said that I probably would have a difficult year and then get things figured out and go on to live OK. And that happened. Having others telling me that made it tolerable and gave me the patience to wait for treatment to work.
Most of the active folks now are newer ones, and many come here just diagnosed and looking for help with no one responding. Now several folks who are new in the past two or three years are active in giving advice to the new folks.
I sometimes report new research results that have come out on the forum. I think that keeping up on the science of MG treatment and research is important for those of us with MG. You may agree or disagree with scientific research as you choose, but for me, science is really the way that treatment progresses.
I used to get into discussions with folks who preferred unscientific strategies for treatment, and warned them that they were playing with their lives when we know that in the pre-treatment (pre-prednisone) days, 40% of untreated folks died in the first 2 years. Folks who get MG first seem to jump to the conclusion that they are doing something wrong (diet, exercise, vitamins....) and so respond by trying those when they should be listening to their neurologist and following her treatment plan.
If you want a forum where folks are into alternate treatments, try a few on Facebook. There they seem to tolerate no scientific check on the folks who post their remedies. I found that out when I offered the suggestion that a change in diet is not going to get your out of general MG and got booted for being so heretical. The biggest forum there is filled with folks who seem to think that seeing a doctor is the last resort for cures.
Personally, I would not take PLEX or IVIG unless I had no alternatives, primarily as I really don't like the idea of being tied to the hospital so tightly and the overwhelming cost sort of boggles my mind, even though my insurance would cover them. However, sometimes we don't get a choice in our treatments and have to take what works. I continue to worry that there will come a time when costly treatments will no longer be available as scarce resources are rationed, and as an old person, wonder if I might be first dropped as not being worth the cost.
Good Luck
Sharing advice is something those of us who have weathered MG can do to help others. Cgreens, hope you continue to help out.
Russ
It’s easy to pop a bunch of pills every day and sit on your couch but it’s darn hard to make permanent lifestyles changes.