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...
Well maybe you have curare poisoning, but that's not why you are here.
We go to the neurologist (and this group) because we are having serious problems with our muscles, that could well be MG. We are on Mestinon because the neurologist considers it a possibility worth testing with medication or to placate us. The tests have come back negative and we are told we do not have MG and sometimes flat out that we are crazy and dismissed with no referral, or a maybe left with an improbable diagnosis of MG and with or without a prescription.
Maybe we have already responded although he Mestinon is usually at a low (and probably inadequate) dose for MG. Eventually we get sicker or discouraged or angry or all those things and figure "why take Mestinon if I don't have MG?" and stop. What happens next is usually NOT GOOD. In my year + on site, I have seen it happen with seronegative people over and over again. The reason the Mestinon seems not to be helpful is usually because of the variability of MG or the disease is progressing and the dose is inadequate. It doesn't help that the doctor is ambivalent and the medical profession is inadequately trained for recognition and treatment. When we end up in the ER no one knows what to do with us and even if we can tell them, they are not listening. Without a neurologist and diagnosis to back us up, we are very likely to be sent home to try and live this thing out by ourselves.
Please do not do this. Please keep looking for someone who will listen to you, get yourself to the nearest neuromuscular specialist that will treat seronegative people--ask here. Take your Mestinon. The neurologists know we are out here--most have no idea how many of us there are. b.
We go to the neurologist (and this group) because we are having serious problems with our muscles, that could well be MG. We are on Mestinon because the neurologist considers it a possibility worth testing with medication or to placate us. The tests have come back negative and we are told we do not have MG and sometimes flat out that we are crazy and dismissed with no referral, or a maybe left with an improbable diagnosis of MG and with or without a prescription.
Maybe we have already responded although he Mestinon is usually at a low (and probably inadequate) dose for MG. Eventually we get sicker or discouraged or angry or all those things and figure "why take Mestinon if I don't have MG?" and stop. What happens next is usually NOT GOOD. In my year + on site, I have seen it happen with seronegative people over and over again. The reason the Mestinon seems not to be helpful is usually because of the variability of MG or the disease is progressing and the dose is inadequate. It doesn't help that the doctor is ambivalent and the medical profession is inadequately trained for recognition and treatment. When we end up in the ER no one knows what to do with us and even if we can tell them, they are not listening. Without a neurologist and diagnosis to back us up, we are very likely to be sent home to try and live this thing out by ourselves.
Please do not do this. Please keep looking for someone who will listen to you, get yourself to the nearest neuromuscular specialist that will treat seronegative people--ask here. Take your Mestinon. The neurologists know we are out here--most have no idea how many of us there are. b.
Annette
Your medical background and knowledge has very probably saved many of us here.
Getting ready to go to my first MDA event with my son, a trip to a waterpark for MDA families only.
Are you able to give your opinion as well why when taking the max dose, Mestinon works on some sets of myasthenic muscles pretty consistently but other muscles that are also myasthenic they do not seem to respond at all....
Calmday
Perhaps it is for the same reason that some muscles are more affected by myasthenia than others. Sometimes this has to do with use or overuse, but why some have bulbar symptoms and others primarily respiratory, and others leg weakness and others only ocular, I don't know. I would suspect that the muscles that do not recover well with treatment are more affected by antibodies. Embryologically cells know by position which genes to switch off and on, and so not all muscles are exactly alike and we may be set up embryologically for problems with certain kinds of muscles. That is just a guess.
I have just read what you have written after I posted on" fatigue."
Lorraine
U R AWESOME
Since Mestinon can work well with some muscle areas and less well with others has anyone noticed that by increasing a dose - some muscle areas that are fine with a smaller dose feel like they are getting an overdose with more Mestinon?
For example, my normal dose seemed to make my vision better but higher dose made it worse but it seemed that limbs got more for their money with a higher dose. Could have been a coincidence as well...Maybe I need localized Mestinon injections!!!!!!!
Calmday
I remember you saying something about a sensitivity to your medications. I am the same too. Whatever a doctor prescribes after I explain clearly that I need much less than normal people do - then I usually still end up having to half the amount prescribed one more time - whatever the drug is. What I also wonder is maybe another drug needs to take over the muscles that Mestinon is not so effective with. Luckily 3 weeks ago when I had some restrictive breathing those muscles involved were very obedient to 30 mg of Mestinons instructions within 20 minutes of ingestion :) But if I take more my vision gets worse.
Calmday X
I feel very fortunate that I'm not easily made to internalize the imperfection of a system. It never occurred to me to feel crazy or that I didn't have MG because the doctors couldn't collect their precious data. My symptoms are so classic and textbook that it took only a quick Google search to lead me to the MG wiki page, where, upon reading, I felt utterly sick to my stomach with the sad realization that, despite its unthinkable ramifications for my endurance training, this is what I had.
Understandably, a litigious society will leave doctors feeling vulnerable about aggressively treating patients when conclusive data isn't present, but I find it quite troubling that they are so intellectually close minded that they have blind faith in imperfect diagnostic tools. Those with the most health to lose are the most difficult to diagnose, and I have no faith in the tests. Doctors need to remember that the job of a doctor is to preserve health! (Not pass the patient on like a hot potato.)
It must be very difficult to manage observations when being made to feel that the problem is nonexistent. I concur with b that trust should be placed in the Mestinon, if that is the only drug you have in your bag of tricks. It helps to keep a spreadsheet or log of symptoms as they relate to dosage.
Also, I think Mestinon itself, because it permits you to use the muscles you want, will land you in a place where certain muscles become more tired than others. When I crazily try to run greater distances, the amount of Mestinon I need to, let's say, get out of bed afterwards, will effectively "overdose" my eyelids. My core and legs (but especially my core muscles) are where I get hit hardest.
My neuro said he would not start Imuran "yet" from which I am infer that he does intend to begin treating me more aggressively but that he doesn't know how. I'm currently on 20mg of prednisone (my favorite magic drug), but that it not enough. My need for Mestinon has an inverse relationship to the amount of prednisone I take, which should be further diagnostically significant. I would gladly allow my neuro to follow me around for a few days to collect evidence of my condition, but the neuro who administered my SFEMG would only do so at 7:30 in the morning, a time when I feel almost normal! They sure want YOU to fit into their little calendar and data collection boxes.
Tricia and Calmday, I agree about the smaller doses more frequently. I've learned everything that has helped me get by by not rigidly adhering to a schedule.