A few people have noted the overlap between POIS and Myasthenia Gravis (MG) symptoms. I believe that in some cases the two are linked (mine included).
In short I get some of the common early MG conditions as a function of POIS ( speech / dysarthria, loss of ability to smile, issues maintaning eye contact, brain fog, etc).
In 80% of people with MG, they have antibodies against the acetylcholine receptors (and have blood tests to mark the issue). Another ~10% have antibodies to the MuSK protein. The remainder have neither.
For POIS a subset of us find that we're able to treat the symptoms with choline supplements (a bio available version). I find that choline makes the MG like symptoms go away.
I have found through 23&me that I have several somewhat common mutations that affect choline processing. MG can have a genetic component in a small number of cases.
I believe my symotoms and the genetic test links the POIS to the MG like symptoms in a meaningful way.
I am working on figuring out what tests to run (given a willing doctor and patient) to confirm / refute that the two conditions are linked in my case( and perhaps providing a diagnostic marker for a subset of POIS sufferers). I do not believe I will show the antibodies given the likely genetic cause.
Any thoughts appreciated
Thanks!
TT
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* note - just modified title to include CMS (Congenital Myasthenic Syndrome - discussed in post below)
Hello This type
Thank you for your very helpful note that make me aware of existence of disorders so called CMS and MG
. i took a brief look about these disorders its fit to me the symptomes. but after watching some CMS and GM videos in youtube , i found
them (suffers of CMS AND GM) in very worsen versions . for example if i consider myself as a MG , so i can say that i have never
had one week side of eyelid that one is open and other was halfopen . but i can say that most of times both of my eyelid seem halfopen
i i seem as if i want to sleep and my parents say me that have you need to sleep yet ?
. this halfopen eyes accompanies with deep
sense of need for sleep. i also have weak muscle .because if one person hits me or apply a force toward to me , i can easily be moved
from where i stand . or when i do(give) a handshake with others , i think that they pressed my hand very stronger than what i do , i
aslo have difficulty in breath taking . when i was not on any SNRI or doluxetine , my blood HGB or hemoglobin level gets to high level
than normal range .near 17 . i think tahk this rise in HGB level is not reevant with the power of lungs muscles . and it needs to produce
more HGB in order to produce more oxygen carriage (only is my hypothesis) . if i take a hot shower specially at limited size ans small
bathes , i get a very bad feeling like asthma and difficulty in taking breath . also if i run or do a relatively strange act , like running on
cardio machine , i get very soon tired and asthma like situation . i was thinking that this sense of very tire and fatigue may be related to
heart coronary vesseles , but after i did a Cardio EEG ON THE high rate and stress and running , i couldnt tolerated even till the end of
test and was feeling that i was dying and asthma ,but at the same time test results didnt show any abnormality of heart functions and
dotor said you should have become only tired may be . so i want to ask you or other observers that would you think i have MG like
or would you reccomend me take a EMG test of muscles and nerves in order to detect MG ? in other word i can not make sure if
am i a MG or at least MINI MG ? or may be every body has the same feeling like i do ?
you also had said that you use phosphatidyl choline , i coudnt found this product . also couldt found MYTHELASE near me at drugstores
, i only found , pyridostigmine and prednisolone . could i test this druge instead of phosphatidyl choline or MYTHELASE ?
any suggestion
thanks for your comments
