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...
Good day all.
I am a 42 years old woman in the process of being diagnosed with MG (more testing required) and it is a long journey as I am seronegative. My new neurologist prescribed me Mestinon. I am now taking 60mg twice a day and it works well. I can finally have 4 to 5 hours of “normality” per day and it is amazing! Mostly as I have been home for the past 1.5 years and needed to use a wheelchair to run errands etc. Based on your experience, would you say that if Mestinon is working, i.e. making a significant change in my days, it confirms the Dx of MG? I feel extremely isolated and have a thousands of questions. Thank you for your time!
I was officially diagnosed with MG after I failed a single fiber emg. This was done at university of Michigan. My neuro then put me on mestino n to see if it improved symptoms and it did! I remember those first days where I could finally have a few hours of some productivity after taking the mestinon! My diaphragm was very weak which made breathing very hard and caused extreme fatigue. My neuromuscular doc is very good with many mg patients and he also administers the single fiber emg himself. He likes to see two "tests" if you will for confirmation with seronegative. Mine were the single fiber emg and the improvement with mestinon. I
I'm curious what tests they are doing with you?
I am now on cyclosporine which is an immunosuppressicent (I can't take prednisone) and I have improved significantly.
I hope this helps. Your not alone.
Cyndi
Thank you very much for your reply! I am sorry it took you 5 years to be diagnosed. I am awaiting the appointment for the single fiber emg. I was told it could take many months as only 1 neurologist can do it and unfortunately not mine, So I am keeping my fingers crossed that it works. Mestinon is a game changer for me as I can now walk more than 100 feet without my legs getting week and painful and without being almost bed ridden for the remaining of the day after. I am happy I can have a little of normality in my day. I will ask my neurologist if I can increase to 3 x 60mg/day.
Thank you again for your quick reply! I feel less isolated now!!! All the best to you in your MG journey.
Mgcyndi2019@gmail.com
Have a good one,.Cyndi
I started on Mestinon too and then added prednisone. I had to take about a 60mg Mestinon pill every 3-4 hours when I wanted to function when first diagnosed. My neuro prescribed them for me as up to 8 pills per day as needed and I took them when I planned to do something physical.
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Mestinon at high doses made me sweat a great deal if I was working in the summer; it gave me digestive upset and night leg and foot cramps.
However it let me function while waiting for my immune suppression drug kicked in.
I took two loperimide pills (Imodium) in the morning to cope with the digestive upset and always took the mestinon with a little food. I carried antiperspirant and wet-wipes with me as well as an extra shirt in the car to change. And for the night cramps, did a lot of stretching legs and calves at bedtime as well as quit taking them at 5 pm. With the high doses I could almost function normally for hours at a time.
Good luck with the diagnosis. As Mestinon doesn't do much for anyone other than those of us with MG, that you respond means you likely have it.
The good thing about MG is for most of us it is treatable and we can live decently normal lives with treatment. Treatment is something to slow our immune system churning out bad antibodies, and so although treatment is complicated, it works for must of us. The first year is tricky as we get it all figured out.
Good Luck
Russ
Thank you Russ for the additional info! Yes the cramps are hard to get used to and I have been having them for months now. I sweat a lot too since I started Mestinon, especially at night! Some nights I have to add towels in the bed (not to wake up my hubby) and change PJ! But it is worth it as Mestinon gives me some life back.
Thanks to both of you! It is great to see I am not alone and that we can share our stories!
Hi Clara
I am 67 years old I was diagnosed with MG on February 21 2018. Initially my symptoms started with double vision in September2017. To make a long story short I was sent to a ophthalmologist neurologist she diagnosed me with a mini stroke was told I would get better. The next visit (month) with her my eyes begin to change and she said I could possibly have MG. MG what is that. Two days before Thanksgiving my symptoms moved to slurred speech, being lethargic, and weakness in my right hand. Was admitted to a local hospital for a mini stroke (AGAIN) After diagnosis 2 weeks later I was admitted to Duke Hospital. The first medicine they gave me was MESTINON yes, before began to take that I couldn't bath myself or dress myself. They gave me my first dose the night they admitted me the next day they started me on paraphrase treatment, the next day I could shower myself and dress myself oh HAPPY DAY.
I am on mestinon, prednisone, cellcept and have had IVG treatments for MG. I'm much better than I was, but I've gone from being a woman on the go everyday to being house bound. I do hope I will be able to try this new medication.
I was diagnosed with MG a few months ago after the acth antibodies came back positive twice.
Mestinon is a miracle for me.
At first I was given too little. I have found it works best if you adjust the dose yourself.
30 mg every four hours was where we started. I now take 30 mg at 6 am. 60 mg at 9 am, 12 am, 4 pm and 7 pm. I use an app called dosecast to keep track of it all. You do not want to take too much mestinon because it can cause respiratory failure.
Sometimes I skip or reduce a dose if I am doing well. I usually need 30 mg more at every dose for the week before my period. Not sure why hormones mess the MG but I am going to have a mirena iud implanted to try to help stabilize them.
If (when?) you start prednisone, be aware that it can cause myasthenic crisis. I nearly died two weeks after starting it and needed IVIG.
Also, myasthenia is tricky to diagnose. I now know I had it twelve years before I became seropositive.
Best of luck!
Sonya
I see so far that the people are involved actively in dx or newly dx.
I am a seronegative who's dx came after an active 13 month, 23 Dr road that began my MY MG life in 1986. Dx at st Louis university. I had a thymectomy in January of 1987.
I've been thru a regimen of treatments which include over 100 plasma exchanges.
I just went to a new PCP who did a bunch of bloodwork. I had been telling my Neuro that something else was going on. Not did he find some new stuff to add to my list.
Oh well, I know how tiring this is so I'll talk to anyone who wants to talk specifics of had questions I can answer. Good Luck all and much Love.
Welcome to the group. Sorry to hear you are having problems. 1986 to now with MG is a long time.
To get responses you should make a new post rather than comment on an existing one. You can do that by clicking the + at the top right.
Good Luck
Russ
TJ