It's June: National Myasthenia Gravis Awareness Month
June is National Myasthenia Gravis Awareness Month. Created by the Myasthenia Gravis Awareness Foundation of America, Inc. 15 years ago, this month highlights the condition and, above all, lets those afflicted by Myasthenia Gravis know they are not alone. To honor this we want to do our part to dispel the misconceptions out there about this condition.
The Top 7 Misconceptions About Myasthenia Gravis
If you suffer from MG, we hope you've never heard any of these often hurtful statements. If so, we hope that sharing them in this article will help debunk these misconceptions:
- He's just lazy. During a crisis, MG sufferers cannot physically move their limbs. They often have to be carried to the bathroom and need assistance in showering.
- She was fine last week, I think she's making this up. Remission is possible with MG, but it doesn't mean a person is cured. The condition can come back at any time, without warning.
- If she was stronger and exercised more she would get better. While physical therapy can help, when in crisis an MG sufferer can be exhausted by even the most mundane tasks such a showering or preparing a meal.
- It's just mind over matter. She doesn't want to get better. To doubt the will to get better, to go back to their "normal" life, is one of the most insulting misconceptions there is. Those with MG often go through frequent infusions, take prescription drugs with adverse side effects, and undergo surgery.
- He looks normal to me. Internal pain is impossible to see. So just as an internally torn muscle in an athlete causes them to miss a season, the internal weakness in the muscles of someone with MG causes them to miss out on all the things they love to do.
- She's walking fine—why does she have a handicapped parking pass? Since those with MG are able to get around on a good day, only to be unable to move from the car to a wheelchair the next, a handicapped sticker is most certainly needed.
- There are lots of good treatments. Yes, and many of them help. However there is no surefire way to treat the condition and many treatments cause serious side effects.
Statements like these sadden me. Myasthenia Gravis is a condition recognized as disabling by the Social Security Administration. It is a rare and all too real disorder that causes anywhere from slight fatigue to permanent disability and death. There is nothing "fake" or "harmless" about MG. Please share this article on Facebook, Twitter or anywhere you wish. Together we can spread the word and debunk common myths about MG.
1 Comments to "Common Myths About Myasthenia Gravis Debunked"
In February a new assessment was done for my eligibility for House Calls. The NP who did the assessment did not know the correct definition of homebound according to Medicare dot gov and admitted not being familiar with MG. Subsequently, I could no longer obtain refills for my blood pressure medication and my blood pressure rose significantly. I am on prednisone. When I called my Primary doctor he refused to approve the refill and said that if I could leave the house to see my podiatrist then I could come in to see him to get a refill approved. I told him that the assessment was incorrect and referred him to the Medicare website and also to MGFA dot org website.
I called 911 and was admitted to the hospital and informed that I had had a mild heart attack and possibly also suffered kidney damage.
This doctor sent me a certified letter informing me he would no longer be my Primary Doctor as of July 2017.
What recourses do I have inholding both my Primary Care Doctor and the Nurse Practitioner who did the assessment, and refused to give me a second opinion, accountable?
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