I know someone who had this and she got a personal trainer to help her strength train her muscle for an hour every day and she gained all her strength back and no longer has any symptoms of ever having this, there are always ways to beat a disease without testing drugs.
helpful.. . but I am not afraid of falling, I am afraid of contact with hard ground! : ) Was finally diagnosed with IBM despite every sx save unilateral ptosis and instructed by PT to push through the fatigue and pain, be more disciplined in frequency, not let the day after exhaustion , was going to lose muscle. My rescue dog has been quite agitated the more time has gone on, Now am on Mestinon and have positive response, dog relaxed but still alerts when time for pill,herds me to bed regardless of time when severely fatigued. Kind of wish any of the 4 PT's would have looked beyond the diagnosis and focused on what was happening to me over the 4 years. Not sure what level of activity I will get back to or when but guarantee it will be led by a big black shelter dog and augmented by your recommendations as he approves.
With Myasthenia Gravis, the more you move a muscle, the more antibodies attack, causing more weakness. During exacerbation, especially when the diaphragm is affected, it is DANGEROUS to exercise. It's not just fatigue that Myasthenic feel; its pain, weakness and eventually damage to the neuromuscular junctions.
What can be done for post exertion fatigue or post exertion malaise ( same thing terms used in different countries) Like I went to Walmart, parked as close as I could, used a mobility cart, bought a lot of groceries because hadn't been able for a while. I carried the perishables only in and put them away then crashed out on the bed.. It took me 9 days to recover back to my then baseline which was not good to begin with......Washed and dried 3 loads of clothes..... Took me 5 days to recover......I'm getting worse instead of better this exacerbation is worse and very prolonged.... I am starting to have shortness of breath with activity , sometimes just talking....and had a bronchospasm.....that was scary. Now I notice on some deeper inspirations it is ragged or ratcheted instead of smooth......anyone else have these symptoms? I was dx'd with a "very mild form of MG" ( occular) and the neuro said it wasn't anything to worry about. Years later Dx'd with CFS. ( called ME in other countries) I was told you have CFS and there is nothing that can be done for it, you just have to learn how to live with it...I just feel overwhelmed and lost.
Hi! Conquer MG staff are not medical professionals. Your symptoms appear to be increasingly serious, and should be reviewed with your doctor. The degree of illness can change over time, and you might get a revised treatment. And if not, you might want to get a second opinion at a teaching hospital where neurologists see many MG (and ME/CFS) patients.
For some folks, their MG is too active to do any activity. We're not medical professionals at Conquer MG, and it's always best to check with your doctor. You might still find the article on p.4 from our Dec 2014 newsletter about breathing exercises of interest: www.myastheniagravis.org/wp-content/uploads/2014/07/December-2014-Conquer.pdf
I know someone who had this and she got a personal trainer to help her strength train her muscle for an hour every day and she gained all her strength back and no longer has any symptoms of ever having this, there are always ways to beat a disease without testing drugs.
helpful.. . but I am not afraid of falling, I am afraid of contact with hard ground! : ) Was finally diagnosed with IBM despite every sx save unilateral ptosis and instructed by PT to push through the fatigue and pain, be more disciplined in frequency, not let the day after exhaustion , was going to lose muscle. My rescue dog has been quite agitated the more time has gone on, Now am on Mestinon and have positive response, dog relaxed but still alerts when time for pill,herds me to bed regardless of time when severely fatigued. Kind of wish any of the 4 PT's would have looked beyond the diagnosis and focused on what was happening to me over the 4 years. Not sure what level of activity I will get back to or when but guarantee it will be led by a big black shelter dog and augmented by your recommendations as he approves.
With Myasthenia Gravis, the more you move a muscle, the more antibodies attack, causing more weakness. During exacerbation, especially when the diaphragm is affected, it is DANGEROUS to exercise. It's not just fatigue that Myasthenic feel; its pain, weakness and eventually damage to the neuromuscular junctions.
What can be done for post exertion fatigue or post exertion malaise ( same thing terms used in different countries) Like I went to Walmart, parked as close as I could, used a mobility cart, bought a lot of groceries because hadn't been able for a while. I carried the perishables only in and put them away then crashed out on the bed.. It took me 9 days to recover back to my then baseline which was not good to begin with......Washed and dried 3 loads of clothes..... Took me 5 days to recover......I'm getting worse instead of better this exacerbation is worse and very prolonged.... I am starting to have shortness of breath with activity , sometimes just talking....and had a bronchospasm.....that was scary. Now I notice on some deeper inspirations it is ragged or ratcheted instead of smooth......anyone else have these symptoms? I was dx'd with a "very mild form of MG" ( occular) and the neuro said it wasn't anything to worry about. Years later Dx'd with CFS. ( called ME in other countries) I was told you have CFS and there is nothing that can be done for it, you just have to learn how to live with it...I just feel overwhelmed and lost.
Hi! Conquer MG staff are not medical professionals. Your symptoms appear to be increasingly serious, and should be reviewed with your doctor. The degree of illness can change over time, and you might get a revised treatment. And if not, you might want to get a second opinion at a teaching hospital where neurologists see many MG (and ME/CFS) patients.
Nice
Great
What if you can't walk at all or even wash a dish?
For some folks, their MG is too active to do any activity. We're not medical professionals at Conquer MG, and it's always best to check with your doctor. You might still find the article on p.4 from our Dec 2014 newsletter about breathing exercises of interest: www.myastheniagravis.org/wp-content/uploads/2014/07/December-2014-Conquer.pdf