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...
Well went to the Doc he said I have MG , but the blood test is not back yet. My symtoms are Sagging eye with double vision and Jaw mucils quiting on me. I work hard all day out side and IN THE HEAT! all day every day Building Handicap Vans,Entry ramps and Voice activaded systems for Quads who live in beds and wheel chairs. The Doc said no working out and stay out of the heat, so is swimming bad , its a cool place to be in and no heat ??? Anybody ??
Glad to hear you wish to keep fit, which is very important. Good luck and enjoy.
Bruce
Sorry to hear about the diagnosis.
On the other hand? Glad you have the diagnosis.
It makes getting treatment-options - so much easier.
Did the doctor - give you a prescription of Mestinon, to try?
Just for the short-run, until the test comes back?
In general: if you have MG, Mestinon will probably help you.
If you don't - have MG? Mestinon is not gonna hurt you.
If the Mestinon helps you?
That is generally considered - to almost be a diagnostic for MG.
Because Mestinon works on very little, besides MG.
One other point: about your work, and about swimming too.
Your doctor - is really telling you?
To cut WAY back on physical-exertion - of all kinds, in all places.
If you are in a weakened state, already? With the MG symptoms, that you have described? You want to be very careful. You want to be resting - as much as possible.
Hard work, outside in hot weather? Just not compatible with MG.
I used to be a carpenter. Sometime I'll tell you my story, about collapsing on the job, after working hard outside, in the heat. (The last thing I remember - was the EMT sirens, finally getting closer.)
Bruce is right on, with his warnings about pool swimming.
I'll add another, again - learned the hard way.
If you are in weakened condition, due to suspected MG symptoms?
Exercising in a pool - is one of the worst things, you can do.
Because you are using ALL your muscles.
To push your way - against and through - the dense water.
Swimming for exercise - is great for normally healthy athletes.
It's lousy - for MG patients, especially newly diagnosed MG'ers.
Is your doctor a PCP, a primary care physician?
What used to be called - a family doctor?
He has done well by you, so far.
But he needs to refer you, to a neurologist, who is a MG Specialist.
My PCP was the first - to diagnose my MG.
He was also the first - to prescribe Mestinon for me.
But MG is well beyond the experience - of most PCPs.
Bruce and I - have a working-definition - of a MG Specialist.
An MG Specialist: is an experienced Neurologist, who has developed a good background in MG, both by study and through care of MG patients.
To give you an example: my MG Neuro - belongs to a neurological practice, made up of 6 neurologists. This combined practice - carries a patient load - of approx. 200 MG patients.
That's about an average - of 25 MG patients, per neurologist.
I guess what I'm trying to say?
A doctor who sees a MG patient, only once in a while?
Is outmanned and outgunned - against MG.
You need a real gunslinger MG Specialist - to help in the fight.
Okay - enough for now. Maybe too much info.
But there's really no such thing, when it comes to MG.
- Ross
(... up late, taking my last dose of meds, that I missed, earlier tonight ...)
My arms completely went out on me while swiming and I really thought I would drown. It was terrifing!
As Ross says, you use so many muscles swiming it is a risky thing if you are having issues with your MG.
I have found I love to float:) in cool water with a innertube or life vest. floating in cool water with no muscles engaged is a wonderful feeling!
My arms completely went out on me while swiming and I really thought I would drown. It was terrifing!
As Ross says, you use so many muscles swiming it is a risky thing if you are having issues with your MG.
I have found I love to float:) in cool water with a innertube or life vest. floating in cool water with no muscles engaged is a wonderful feeling!
My arms completely went out on me while swiming and I really thought I would drown. It was terrifing!
As Ross says, you use so many muscles swiming it is a risky thing if you are having issues with your MG.
I have found I love to float:) in cool water with a innertube or life vest. floating in cool water with no muscles engaged is a wonderful feeling!
Just be very careful...and if you are on CellCept or Imuran (probably others too) be very careful in the sun and wear protection at all times...there are greater chances of skin cancer while taking those meds (along with Leukemia and Lymphoma too)
Just my two cents
Darci from Chicago