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...
So, I've still been on a whole tablet (60 mg) of Mestinon every 4 hours and 4 times a day. This dosage is doing fabulous! :) It seems to work pretty consistently every time, and I'm having no side effects really. I'm feeling better. It helps my breathing some. I don't really notice it much, especially when laying down or in a reclined position. I have my new recliner manual wheelchair that I'm going out in too. See, that helps more with the problems with my ribs with my condition Escobar Syndrome. I'm definitely gonna look into surgery now. I think I'm getting a little stronger while on meds. I've still been keeping my exercise regimen, which is still difficult with the way my ribs are restricting my breathing and heart. But anyway, I also heard from a woman, who had severe Pectus Excavatum (the sunken in chest), and she had 47% lung capacity. She got the Ratvich done, and it helped a lot. So, I'm gonna look into that surgery.
I've quit drinking, and I take a lot of supplements. I'm taking calcium with vitamin D, Co Q10, Milk Thistle, fish oil every day, and I drink protein shakes every other day after I work out.
So yup, things are getting better already, and I have more plans to improve my health even more. I am so ready :) Also, I've been making plans to go visit friends and get out more. I've already been out a couple times this past week. So, yay!
*Note: I don't have MG. I have Escobar Syndrome.
I've quit drinking, and I take a lot of supplements. I'm taking calcium with vitamin D, Co Q10, Milk Thistle, fish oil every day, and I drink protein shakes every other day after I work out.
So yup, things are getting better already, and I have more plans to improve my health even more. I am so ready :) Also, I've been making plans to go visit friends and get out more. I've already been out a couple times this past week. So, yay!
*Note: I don't have MG. I have Escobar Syndrome.
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Good evening - For the last year I have been treated with IVIGs - 3 consecutive days every 6 weeks.In an email to my Neuro I have requested that my next IVIGs due on April 6th, 7th and 8th be pushed and maybe eliminated. The reason that I am considering this, is because they seem to have no effect on me. Most folks that have this treatment feel better soon after the treatments are...
You go girl!
Best wishes for peace,
TJ
Cathi
For surgery, you know they can have you take it your meds before to help them so that you are breathing better for the procedure. Also, there is IV mestinon if it is a long surgery....
So, 4x4 covers 16 hours, what do you do at night? How are you? Do you have a bipap or something that helps you breathe?
debra
artchick -- I think someone on here told me before that Mestinon can be done through IV during operations. That's some of why I feel better about having an operation now.
I don't have anything for at night. I've been debating if I need that or not. Actually, I was about to post another topic, because I'm concerned the meds are starting to lose their effect on this dosage. I don't have a bipap, but I am supposed to be going to Ohio soon, and the pulmonologist is going to do mouthpiece ventilator training to see if it helps me and would be a good option for me. It'll be portable, and I can use it whenever I feel like I need it.