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...
About the same time, I was diagnosed with MG, I also was diagnosed with sleep apnea. In my mind they seemed part of the same problem. This article says that sleep is a problem with MG. I often used a CPAP breathing machine to assist me when I was at my worst during the day and always at night. When I got breathing difficulties, I sat down, put on the CPAP machine (one that pushed air in and relaxed to let me breathe out), and in 15 minutes or so, got past the episode and the panic that came with it. At night it made it so I didn't need to take Mestinon to breathe, and thus cut down my Mestinon leg cramps. It made the worst period better.
"Muscle fatigue is the cardinal symptom of MG. Respiratory muscle weakness and breathing problems are manifestations of MG even in mild stages of the disease resulting in significant morbidity and mortality. Also sleep related conditions are among the manifestations of MG which include sleep disordered breathing (SDB) [i.e. central (CSA) and obstructive (OSA) sleep apneas, hypoventilation or hypoxemic syndromes], reduced sleep efficiency and quality, increased number of nocturnal awakenings, excessive daytime sleepiness, reduced rapid eye movement sleep and altered sleep perception and dreaming. On the other hand, sleep abnormalities may result in lack of concentration, cognitive impairments and mood disturbances as depression and anxiety. Central and peripheral mechanisms have been suggested for the association between MG and central nervous system manifestations and sleep abnormalities. Neurologists and sleep medicine professionals should be aware of the associations between OSA/CSA, hypoventilation and other sleep related conditions with MG and consider systematic investigations including polysomnography and ventilatory support. This will reduce morbidity and mortality and improve quality of lives of patients with MG."
Just because it’s published doesn’t make it true. There is actually a published article out there that says drinking ice tea helps YourStrengthen vocal cords in MG. Much like putting an ice pack on your eye. For the ice pack test. Well if you consider ice tea goes no where near your vocal cords when you drink It, it’s a ridiculous claim. It’s a entirely different pipe down your throat.
This is a good time to try to understand what is or is not a valid research study.
So in analyzing this, I look first at the author. Is he or she widely published and publishing in their field of expertise.
So if we look at that
S. Hamed
Publications 126
h-index 27
Citations 2,053
Highly Influential Citations 111
(from Semantic Scholar website that rates researchers).
Meaning the author is reputable and the 127 research articles listed there show she is publishing in her own field as an MD researcher and the 2,053 citations means her work is referred to by that many other research papers. Good!
Then the institution:
Prof. Sherifa Ahmed Hamed Omran
Professor, Department of Neurology and Psychiatry , Faculty of Medicine, ِِAssiut University. This, according to Wikipedia is a prestigious university in Egypt, and she is a recognized researcher there in neurology. Excellent.
Then we look at the journal. Now remember this is not a research study, rather one of those publications doctors do for other doctors to encourage better treatment of MG. The setting is Egypt where untreated MG is still a serious problem and undoubtedly mortality is still significant. It is aimed at the third world, but that does not mean it is not significant for others too, including where in the USA mortality is low with diagnosed and treated MG, but still far too often. If you don't agree, search on google for obituary and myasthenia gravis to find the lists of people including this young woman.
an example that tells us what a little what it is like to have MG with others thinking we are faking" https://www.enewscourier.com/opinion/dear-annie-daughter-s-death-leaves-mom-unable-to-forgive/article_80c25ec4-0805-11ea-93b0-9b9f0f7ac9c3.html
Then we analyze the journal itself. This is certainly not one of the top places to publish. It is peer-reviewed. And it is more of a third world effort to publish research from and to those folks.
http://www.sciencepublishinggroup.com/journal/index?journalid=251
As a researcher who published too, we aimed our publications at the appropriate journals for the topic, and that meant we used a wide range from the top of the line and down. It is unbelievably difficult to get your research into the New England Journal of Medicine as it is in competition with 1000s of submissions and in the case of Myasthenia Gravis, of interest to such a small number of doctors and researchers, it just doesn't get there.
And finally about ice tea, if you read about famous singers, you certainly know they all have their teas, gargles, and throat lozenges and drinking practices that they think makes their singing career successful, so I would certainly try ice tea to see if it helped me before dismissing it. Can a million singers all be wrong?
My evaluation of this 2016 (old?) article is that is was meant for a third world audience of doctors who might see an MG patient, and warns them to worry about sleep problems too.
And I think it valid for us too. For confirmation here is a reputable review article aimed at physical therapists trying to decide if MG and sleep problems are co-existant. It says some studies find that and some don't.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500033/#:~:text=%5BConclusion%5D%20Some%20studies%20of%20patients,do%20not%20report%20such%20associations. It is an ancient review from 2013.
Since some studies do show a relationship of MG and sleep problems, , and few of us have "mild" MG, it is something we need to consider..
Russ