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...
I hv read a lot of post in regards to the pulmonary crisis, bottom line what hv ya'll found good basic "red flags"? Sounds stupid but how do u know you are s.o.b.? Told my sister the other day... You know sis how pregnant women get out of breath or short of breath just walking around" she said "umm NO, I never got that way til the end trimester & only on occasion!". My response... I was short of breath all the time while I was pregnant w/ all 4, not overweight either. I feel you'll know if it happens but starting to think after reading post...I need to read up more about this since many things I'd blown off through the years might hv been subtle clues of MG. So any sort of run down ck list or signs would help. Thx. I know a lot r at the convention, Yae hope they have a great time! MeL
MeLisa
This is from a post by Ross to a similar question:
*) Breathing problems of all kinds.
Including: not being able to exhale enough carbon-dioxide.
You can actually have enough oxygen in your blood, but be building dangerous levels of carbon dioxide.
(*) Swallowing problems that get worse: poor chewing, choking, unable to swallow, endangering the airway.
(*) Increases with trouble in talking.
(*) Loss of control of arms & legs. Limbs feeling extremely heavy.
I would add:
With MG the point is to have your symptoms under adequate control so that crisis does not occur.
If possible, call your neurologist for changes in status that are bothersome (like those above) so that if you have to go to the ER or be transported by the rescue squad, the neurologist can give them advance notice of what to expect. Aspiration and respiratory failure are the biggest worries in progressive crisis. As Sherry pointed out, if you are thinking about going to the ER, you probably need to go.
If you take a deep breath and exhale you should be able to count out loud to at least 20. If you cannot, you have some compromise.
Infection and stress on the system of all other kinds will make MG worse, including excessive exertion. Although I have not heard of anyone trying to run a marathon (a half marathon, yes) we don't always make the best decisions of what we should be doing. ;-)
Sometimes those who are in the diagnosis phase pick up the ambivalence of their neurologists, discontinue medication if it has been prescribed, and throw caution to the winds, or ignore symptoms because no one seems to be taking them seriously, a recipe for disaster that happens more often than anyone would like to admit. b.
I always needed my sleep. My mom would say...you need to go to the doctor.. I did once and they said I had fybrominalgia.
anyway
I always felt I tired before anyone else.
Just thought I was a bit wierd...now I see it different.
Ann