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 All,
I am new here and newly diagnosed with Mg and on pyridostigmine (Mestinon for you americans )
I've figured this is not going away! so after having a fews weeks of self pity and feeling very low Ive have decided that even though this is not fun and is a royal pain in the arse but to cheer our selves up why don't we start a list of things that made us chuckle that people (with the best intentions) have suggested we try...
My favourite is a lovely friend of mine recently suggested i looked in reflexology as a cure?! and also suggested i cut out sugar in my diet as in her opinion sugar is the route of all evil!!
what has been suggested to you to try?............
I am new here and newly diagnosed with Mg and on pyridostigmine (Mestinon for you americans )
I've figured this is not going away! so after having a fews weeks of self pity and feeling very low Ive have decided that even though this is not fun and is a royal pain in the arse but to cheer our selves up why don't we start a list of things that made us chuckle that people (with the best intentions) have suggested we try...
My favourite is a lovely friend of mine recently suggested i looked in reflexology as a cure?! and also suggested i cut out sugar in my diet as in her opinion sugar is the route of all evil!!
what has been suggested to you to try?............
I too have had all sorts of advice I thought was hilarious, but when I posted it, found others here were offended. My wife, when she went through cancer treatment a few years ago got way wilder advice than I ever did, as most people have no clue of what MG is and that makes it harder to prescribe magic water, or gallons of asparagus juice.
We have the usual mix of people on this forum who look variously to science, religion, diet, supplements, exercise, etc We have to be careful as what one of us thinks is funny as another will swear by it.
My best unfunny advice for MG: learn everything you can about MG from reading reputable websites, talking to others who have it, and asking questions from your neurologist and assume that the vast majority of people you run into will have no clue of what MG is and that includes the vast majority of doctors, nurses and other medical people.
We are truly rare folks. I found that the more I learned about MG, the more I could plan my future and the better I could participate actively in my treatment plan. Nothing is cut-and-dried in the treatment, so a great deal of trial and error goes on in the first year as we try to figure out our optimal treatment.
Since most of us move from mild to severe MG quickly untreated or with only Mestinon, we start with Mestinon and that soon doesn't do enough and we need to suppress our immune system.
Listen to your body, beware of vigorous exercise, and at the first sign of difficulty breathing, head for he ER with your big sign that says Myasthenia Gravis around your neck! Don't assume the ER folks will know what to do either. When we have what we call a "crisis" it is almost always we can't breathe and panic about it making things worse, and of course it can be brought on by exercise.
Get a neurologist who works with many MG patients and figure out a working relationship with that doctor and her staff -- so you can call the nurse, assistant, etc for advice even when you can't get the neuro. My route was call the office, talk to the nurse or assistant who would find some time to talk to the neuro even though getting an appointment was difficult. We need to adjust medicine levels often in response to changing conditions.
Also assume your regular doctor is ignorant of MG and insist they learn about it if they are going to continue to treat you, or find another one that will or does know The conflict between neuro and regular doctor can be a real difficulty to overcome when you have a regular doctor who doesn't take time to understand MG.
That said, most of us get this figured out, get our lives back, and move out of this forum. Many of the folks here are those who are still struggling to figure out the best treatment for themselves, and often have many complicating conditions that make treatment difficult. Over the 4 years I have been here, a great many of the folks have gotten things under control and moved on, probably staying a year or so. I am doing fine, but hang around to give encouragement to those who are new and might be overwhelmed by not hearing some good news too.
Good Luck Russ
I think the most misunderstood thing about MG is that it is caused by our immune system producing too much stuff, not a weak immune system, so when people push "immune system enhancers" they are giving the opposite advice as we need -- immune system diminishers.
If you
And if I cut out beef I feel better too.
basically I am at my best when I eat fruit, veggies, protein.
It is shocking.
When you go to ER you never have to wait. They take you immediately to a room and start checking you out. It is amazing. Haha
Rhanson thank you that was very informative as i am very new to this i have been reading so many info blurbs, blogs and researches pages but wow so much contradicts others?!
I have a fantastic neurologist which has been totally luck of the draw as here in the uk we don't get to choose our doctors we can request a different one but 9 times out of 10 we cannot.
my GP although very good has no clue about mg as i was having a very bad day last couldn't really walk with out ending up on the floor and when i called him to ask what i should do he just booked me in to see him 2 weeks later as you can imagine not really helpfully but i managed to get hold of my neurologists pa and she got him to call asap (love that woman!)
Annkemp i have to admit your post did make me chuckle as i have been told by my neurologist to head straight for a&e if i have trouble breathing and they will admit me straight away so i does seem a bit like queue jumping.
I do have a question I am being pestered to wear a medi id bracelet but I am not a fan purely because it feels i little bit like a look at me statement (yes we British are odd sometimes) but what is all your take on them?
Kx
On the medical bracelet front, I wear one all the time. I also have a life threatening calcium disorder (still undiagnosed after 8 years - sucks having more than one rare disease!) and I got it for that.
Then I got the tentative diagnosis of MG and started on mestinon and ordered a new bracelet that included that. I've read good things and bad about the bracelet but figure it would help me in an emergency. I slur my words in the cold and it is mighty cold this week in Canada. So if I ever get in trouble when driving alone, especially in winter, I would likely get mistaken for a drunk driver. Having the bracelet to point to, even if I couldn't speak, might mean I go to hospital instead of the police drunk tank.
There are more and more folks wearing bracelets these days. My Saturday Tai Chi class has 5 folks out of 30 wearing them - for diabetes, nut and penicillin allergies, etc. They all know that if I get into trouble, call for an ambulance and point out the bracelet. I've never had a serious crisis but think of my bracelet as an insurance plan.
Flutebell
"Myasthenia Gravis, please google http://www.myasthenia.org before treating me"
How is that for off the wall advice ;-)
Russ
When I was first Dxed, a relative put me in touch with a friend of his who was selling a natural supplement containing manganese that was supposed to cure many things, among them MG, by strengthening the immune system.
The reason manganese is so effective is because the ancients believed it had magical properties.
In fact, magnesium (totally different thing, slightly different spelling) is bad for MG. I didn't end up buying any of the manganese, and, in fact, wrongly told the guy the stuff was poison for MG patients.
Another relative, when I told them what I had and what the symptoms were, told me in no uncertain terms, "That's what I call being tired."
Chin up! (literally), and keep up the great contributions!
~Joe