Is anyone else frustrated by the language on the myasthenia.org site as well as general web coverage re MG?

The myasthenia site says, "There is no known cure for MG, but there are effective treatments that allow many-but not all-people with MG to lead full lives. Although the treatments will not cure MG, patients may have significant improvement in their muscle weakness" See more at: http://www.myasthenia.org/Livingwith....pbzWjzjy.dpuf

I so appreciate all that the organization does for patients but this language is so misleading and bc MG is obscure I've had many friends call and say, "the website says you can lead a fulll life".

My life w this disease is so far from normal and full that I wonder if this, ultimately, does us a disservice. I know the paragraoh above includes the "not all" caveat and that it is super well intentioned but I'm curious what you guys think? I feel like it marginalizes the effect this disease has on my day to day quality of life.

Maybe I'm just frustrated bc I had to cancel dinner plans bc my eyes are done for the day!

I think it only makes us "appear" to have normal lives. Yes I am able to walk, drive and work, most days. It does not mention that I have to bathe in a chair, eat mushy foods (I sure miss steak), run my activities around my mestinon schedule, sleep 16 hours on the weekend so I have the strength to go back to work on Monday, trip and fall a lot, slur my words. It also forgot that I cannot go out of the house if the temperature is above 80 degrees. They forgot about the fact that I cannot go on vacation, even a day trip to the shore or be sure of any plans in the future because I do not know if it will be a good "MG day". And the fact that I need help going the grocery store, I can only go up and down the stairs one a day, I can not go any where that includes going up stairs. I cannot take a long walk, ride a bike, go swimming in the ocean. I have to buy bras that hook in the front, shirts that pull on without buttons & hooks, no more high heels or sandals. It is flat mules I can slip on my feet so I do not need to bend down and tie shoes. And let's not forget the urinary leakage, Immodium for the runs, and all the other pills to counter-act the side effects of pregnisone (6 more pills for me).

Even for those of us that respond to mestinon, life is anything but normal

Sharing your frustration,
kathie

MG cramps my style for sure. I can work, but I feel like crap. I can walk, but not very well or far. Etc, etc..........

Yes, it frustrated me, a lot. Still does sometimes.

When I was first diagnosed ("you have very easily treatable neuromusculair disease") I looked it up. I felt very sick, but read all those things, heard all those things: I truly started to believe I had a disease that was like a vitamin deficiency: yes it caused me a whole lot of problems now, but when started taking pills it will be all over! Boy, was I wrong.
I was, and still am, very disabled due to mg.

I still get people who say; are you sure you have MG, because I looked it up and it does seem like it's very treatable. When a nurse saw me in my wheelchair, she said: but....er...there are so many treatments for MG, are you sure you've tried them all, because people with MG aren't suppose to be in a wheelchair.
An old friend of mine who has cfs wrote me an email, saying she wished she had my disease because that seemed so much less disabling than hers.

But even if all those pills make your life appear normal; working, social stuff, family, ..., you have to deal with side effects. That is not normal!
Maybe the weakness will be much less, but all the other things can have a huge impact too.

It's good to know I'm not alone in my frustration. I think the website should read, "MG can severely alter a patient's quality of life and can be very difficult to manage."

It is better not to sugar coat and we wouldn't have ppl doubting us.

As for your CFS friend I'd crawl out of my skin!!!! That's not ok!!!

Big hugs

Yeah, but can you blame her? (Of course, first I did but I'm over that, she just didn't know better). If you look it up, you think it's not that bad. I did too at first! You think other diseases are way worse because just look it up: cfs or any other disease for that matter. Not that it is necessary to compare, but it strikes me as weird: there is indeed an unnecessary suger coating. It can sometimes even be harmful, when you do not get the help you need (financially for example).

Another example: when I was diagnosed with diabetes (prednisone induced, thank you very much) I was perplexed by what happened! I mean, wasn't I ill already all this time? Now I all of the sudden got "my own" nurse, I got a whole bunch of regular check ups and all kinds of medical attention and even a direct phone number! For my MG i never got my own nurse . I'd rather have a phone number for the times I can't breath than a phone number to say: er...my glucoses is this or that.
Yes of course diabetes is serious, as are many other things. But to me, medical staff too can sometimes take this disease to light.

Ah, well, there are many patients who do get much better with treatment, so maybe they is the bigger part of mg patients? And we are the exceptions. But i agree, even if this is the case, they can put something down like "but some patients still experience disabling problems in spite of treatments".