I'm a new nurse and recently had a patient with MG. Your video helped me understand the illness and medications better, thank you very much and God bless you and your journey with managing MG.
From my experience imuran has nasty side effects also. I am glad I was able to come off if that med! I had plasmapheresis weekly for almost 2 weeks, and monthly since and ivig biweekly you are lucky you are able to work and go to the gym! Ive tried it all inclusing rituxan and silirus and still cant:(
I'm going into gym, 2 days a week, and it helps SO MUCH my myasthenia that is AWESOME!! I also take 60mg Mestinon, every 3 to 4 hours, depending of course how I feel. I don't get it, why you take Calcium? It is supposed to be Kalium (potassium in english) that you take, and it helps me more than prescribed Ephedrine 30mg ... I live in Finland, and have been Myasthenia patient for 15 years now, and what helped the MOST, was the operation in the hospital, where they take your thymus away. That is the first in the line treatment, that is made for Myasthenia Gravis patients here. And it helped me to mumbling noise in speech, to GO TO GYM! and speak normal. Wow! I said ... Best luck for you, and I pray and hope that we some day can cure this illness away for good. Hmmm.. but the big pharma is shady, and I don't trust them. It is hard to trust anyone these days... Much love, and good health to you, and all!!!
Hi….thanks for all the videos and updates they provide so much insight and are very helpful. I have a question about the medications. Is the medical plan covering all the costs. Here Mestinon is very expensive, almost 10k a month and so is the IVG…its about 5k a fusion bottle?
Hello, My girlfriend is suffering from Myasthenia Gravis and she suffers from really bad weakness in swallowing. Her insurance no longer what's to cover her liquid form of Mestinion, any tips on learning to swallow pills with MG ?
imuran is the reason why your hairs are not growing properly you can search imuran side effects. iam also the patient of MG since i was 9 now iam 20 best of luck
I'm a new nurse and recently had a patient with MG. Your video helped me understand the illness and medications better, thank you very much and God bless you and your journey with managing MG.
+Sharon Hammond I appreciate that! God bless you too. And tell your patient to stay strong! There is always hope. Xoxoxo
wow. i wish all patients were as proactive as you ! keep up with it!
Thank you!
This was my life for 17 years until a few months ago..bless you
Myasthenia gravis Warrior Total Life Changes how are u now ? wht u do for your health iam also the patient of MG
God bless you!
I was just diagnosed with MG and had a lot of meds This is a good idea for myself to sort my daily tablets a night before.
My doctor has me on cellcept because I could not tolerate the Prednisone, it keeps me stable. I hope you’re still doing well.
From my experience imuran has nasty side effects also. I am glad I was able to come off if that med! I had plasmapheresis weekly for almost 2 weeks, and monthly since and ivig biweekly you are lucky you are able to work and go to the gym! Ive tried it all inclusing rituxan and silirus and still cant:(
I'm going into gym, 2 days a week, and it helps SO MUCH my myasthenia that is AWESOME!! I also take 60mg Mestinon, every 3 to 4 hours, depending of course how I feel. I don't get it, why you take Calcium? It is supposed to be Kalium (potassium in english) that you take, and it helps me more than prescribed Ephedrine 30mg ... I live in Finland, and have been Myasthenia patient for 15 years now, and what helped the MOST, was the operation in the hospital, where they take your thymus away. That is the first in the line treatment, that is made for Myasthenia Gravis patients here. And it helped me to mumbling noise in speech, to GO TO GYM! and speak normal. Wow! I said ... Best luck for you, and I pray and hope that we some day can cure this illness away for good. Hmmm.. but the big pharma is shady, and I don't trust them. It is hard to trust anyone these days... Much love, and good health to you, and all!!!
It is also good here in Finland, that if you don't have enough money, the government will pay all your medications ...
Hi….thanks for all the videos and updates they provide so much insight and are very helpful. I have a question about the medications. Is the medical plan covering all the costs. Here Mestinon is very expensive, almost 10k a month and so is the IVG…its about 5k a fusion bottle?
My health insurance covers everything. I pay a copay for the mestinon. I get at home infusions mostly for the IVIG. I didn't pay anything for those.
you should of explained the ivig too. i take it but others might not understaned
Plasmapheresis best rest in crisis case
Any updates on your MG?
Hello,
My girlfriend is suffering from Myasthenia Gravis and she suffers from really bad weakness in swallowing. Her insurance no longer what's to cover her liquid form of Mestinion, any tips on learning to swallow pills with MG ?
The mestinon is gross .. however it is just as effective if you let the pill dissolve on your moth some and then drink something. I hope this helps!
What caused your MG? what are the associated conditions? any thymus problems or thyroid?
I am not sure of the cause. It is autoimmune. It was my thymus that was causing the trouble.
Are you type I diabetic too?
I am as well.
I have steroid induced diabetes.
How old are you !
imuran is the reason why your hairs are not growing properly you can search imuran side effects. iam also the patient of MG since i was 9 now iam 20 best of luck
Yes, I am aware that Imuran can cause hair thinning. Thank you for your comment. Best of luck to you too.