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...
Every week I do a google search limited to the previous week on what new has shown up on the internet on MG. This week I found a review article on Myasthenia Gravis that talks about ocular mg (OMG).
Although most of us probably don't need another review of MG, I like to read these as they tend to bring information available to researchers and not the general public (medical journals we can't afford to read) in their summaries of current research, treatments etc.
https://www.researchgate.net/publication/269170076_Ocular_myasthenia_gravis_A_review
When I used to work in research, review articles on a disease were often commissioned by journals or organizations and a well-known researcher or group of them, experts in the field, would write a summary of what is known up-to-date for a quick update for other doctors. And depending on the author, they were valuable to us to keep up with ongoing research findings. Our treatment by neurologists in practice often comes from reading review articles or attending yearly for-credit classes that do the same in person. At Mayo we had a week or two of these updates for practicing doctors every year that gave them the latest info on general medicine or their specialty.
I think the more we know about our disease and the more we understand what doctors know the better we are at being an active partner in our treatment.
Good Luck!
Russ (luck can be altered by knowledge)
https://www.frontiersin.org/articles/10.3389/fneur.2020.00868/full
I like this article because it goes into depth as to how prednisone works, the history of its use, the research done, the problems, the efficacy, dose etc.
As my original drug of choice for MG, I thought it wonderful that it got rid of my MG symptoms, while also rather terrible in some of the problems associated with it.
If you take prednisone, and you understand some of how scientific research papers read (very technical), this is a good summary of the thinking in Japan as to MG treatment.
To read a research paper, you first read the introduction and see if you can understand that, then jump to the end where you read the conclusions or discussion. The area in-between mostly is the details of the research. That includes -- what others have done before you, what you intended to do in this research, how you did it, what you found out, and then what it means at the end.
Having done decades of reading these for a living and helping produce well over 100 myself, one gets a feel for them. The quality of the research done is sometimes spotty, so we look at the author's reputations, the journal it appears in including if it is peer-reviewed and so on to help judge the validity of the whole effort.
What we learn from this one gives us a better view of our own choice as to prednisone as a treatment.
It is a cool rainy morning here in NW Wisconsin, USA, and I am enjoying the end of August, sitting on my roofed porch, flannel shirt on, watching the rain end and thinking about digging my potatoes. My life has been in MG remission for several years now, but the return is always on my mind, so I try to do as much physical now as I can, document it by my facebook diary and little videos of me active so if MG returns and this time prednisone doesn't work, I have something to remember I could do things once.
I have a 25 apple tree orchard on a farm, what is left of 125 full sized trees my parents had on their dairy farm and today the local Lutheran Church folks are coming out to pick apples for their fall fund raising effort - selling apple pies. I did a wandering walkthrough video of them making 170 pies a day in the church basement last week. You can see them at this video link
https://www.youtube.com/watch?v=TgmAq5uq2q8
When I got MG in 2012, was in the hospital in crisis, I figured my physically active life was over and so wondered what I could do when I couldn't even walk 100 feet anymore. And so I bought a 42X zoom point-and-shoot Nikon camera and aimed my life to take photos. I got better and went into remission from MG, but kept my photoshoots and dabbled into home videos that document some of the things in our neighborhood. It is fun to be an observer.
Good Luck my friends
Russ
thanks for the article and site, it is to the point, as it should be easy to undesrtand and apply
thise coversation in regard of faces of prednisone i da in 2013 with my neuro and endo, which i undesrstood the importance of prednisone as the drug of mg along with mestidone
the parameters where left up to me to aloww my body to accept and know how to withdraw to the minimum,
i had in prvious blogs explain the fonction of corticoid dteroids, and hope that with this infromation patients will be able to manouver it to satisfaction, the only thing that i will say again as i judge imporatnt is that our boby prduces 5 to 7mgs. of cortisol dayli, and the reason behing taking the minimum of 5 mgs, every other day is to complement our body and and to perform better
o haved follow that rule and it has worked for my, altough i am generalized bulbar with dangerous underlying condition
iam able to no take prednisoe for few days or a couple of weeks if i judge necessary with the approval of my doctors
this last 3yrs after my most dangerous relapse, i feel so good like i never felt before
also yes i am able to compensate with natural meds, being allmost 82 it is not easy as our bodys change with time
good luck to all
Andre