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...
hi everyone,
Hello, I just joined up. i'm sero-negative with bulbar, limb, ocular, and respiratory involvement. Trying to get a diagnosis is slow-going and I was in the hospital last month with breathing problems that led me in the MG direction.
I am on 40mg prednisone and 60mg mestinon every 6 hours/day and night and I cannot do almost anything still after 7 weeks home from the hospital. I was using a walker for almost a month due to leg weakness and although I can walk right now, my leg strength is only at 5-20% and variable.
Even on all the meds, I have struggled weakness, choking at night and in the day, pumping, feeling winded, water going up my nose when I drink, and fatigue.
What is a typical day like for someone with this diseae? Can you have a relatively normal life or are you stuck on the couch too? When I do things, I find I cannot walk up to bed later that night without assistance or I have a lot of choking issues.
I want to know if it gets any better. . .
thanks
Hello, I just joined up. i'm sero-negative with bulbar, limb, ocular, and respiratory involvement. Trying to get a diagnosis is slow-going and I was in the hospital last month with breathing problems that led me in the MG direction.
I am on 40mg prednisone and 60mg mestinon every 6 hours/day and night and I cannot do almost anything still after 7 weeks home from the hospital. I was using a walker for almost a month due to leg weakness and although I can walk right now, my leg strength is only at 5-20% and variable.
Even on all the meds, I have struggled weakness, choking at night and in the day, pumping, feeling winded, water going up my nose when I drink, and fatigue.
What is a typical day like for someone with this diseae? Can you have a relatively normal life or are you stuck on the couch too? When I do things, I find I cannot walk up to bed later that night without assistance or I have a lot of choking issues.
I want to know if it gets any better. . .
thanks
Thymectomy looks like it will be sometime in October if my strength continues but we are reducing the prednisone and are using mestinon only as needed now so that we can assess true strength he says. My doc wants to make sure I am super ready for the surgery since I'm having to do transsternal and with the respiratory issues, that is going to be a major consideration.
Today is my last day of 5 for IVIG round 3. Yesterday went well but day 3 was way rocky with high blood pressure, shaky legs and no walking for a few hours. . . and then I came around and it was all good again. Crazy times.
Cathi
Best wishes,
Lindie
Hugs
Ange
Thanks for the encouragement you guys! I am looking forward to the possibliltiy of things turning around. . .
Ange
Best wishes,
Lindie
I saw my doc about the issue and he said that IVIG can make your blood kind of thick and make you feel under the weather for a couple of days but it went on for about a week for me. We are changing back to the other manufacturer. He may also change to 3 days instead of 5 and move the treatments closer together if I have probs at the end again-it just may be to much for me.
The other thing is that he put in an order for a beta blocker to be put in the IV if I get the BP spikes and the tachycardia again and that should help a lot since I am just now getting better BP and heart numbers a week later . . .
I'm down to 30mg pred (from 60 in hospital!) and off the mestinon 2 weeks now and doing great so the IVIG is really working, just dealing with the kinks.
Oh, and we meet with the surgeon on Thursday so that'll be really exciting. I am happy to be feeling good again. I have a week til infusions start again.
Cathi