Living With MG

 

TAKE A DEEP BREATH

You may have endured debilitating symptoms for some time now; perhaps blurry vision, a drooped eyelid or muscle weakness. You may have undergone a number of tests and been misdiagnosed or even hospitalized and wished that a knowledgeable physician would be certain about your diagnosis so you could get on with the proper treatment. And now you’ve finally heard the words, Myasthenia Gravis. It sounds ominous. You may have never heard of this neuromuscular, autoimmune disease and perhaps your family and friends haven’t either. You’ve finally got your correct diagnosis, but what does it mean to have this chronic disease? Your doctor says you should look it up on the internet, but where to start?  Will you be able to keep your job, stay in school, hold your marriage together, be there for your children and afford the treatment? They’ll be lots of questions and anguish, but one thing is for sure, do not get into a denial mode. You’ll need the best of your abilities to take care of yourself and organize your life. It’s time to learn as much as you can about MG so that you can understand what is happening to your body, communicate effectively with your physicians and with your family and friends. If you have symptoms that interfere with your ability to perform at work, you may have to educate your employer as well.

You can get another perspective as well by going to our Facebook page at www.facebook.com/mgakc. You’ll see that people living with MG use this page to ask questions of each other, get tips on coping and basically learn more about MG.

CREATE YOUR HEALTH HISTORY
Your primary physician has gotten to know you over time and you probably thought it wasn’t necessary to create a one or two page version of your health history, but you’ll be seeing a neurologist now who needs to get up to speed regarding your health status. Although every physician’s office asks you to complete a health history before you see the doctor, it is a good idea to create your own. Once you have your health history it is much easier to complete the medical history form in your doctor’s office. Here are some tips of what should be included. No need to use complete sentences; just the facts, dates, tests, medications, etc. and you’ll want to make a few copies.
• Name, address, phone, cell, email, date of birth, insurance plan & ID, who to call in case of emergency, relationship, address and phone at the center top. List the current date on the far right:
• Name of primary physician, address, phone, FAX and email:
• Current medications you are currently taking with dosage:
• Blood type:
• Issues regarding anesthesia: MYASTHENIA GRAVIS
• Allergic to medications:
• Allergic to anything else:
• Last flu, pneumonia and tetanus shots:
• Current conditions and what doctor is treating you for each condition:
• Surgeries, date and surgeon:
• Injuries:
• Any historical conditions that may be pertinent to your care:
• Current health issues:
• Current Living Will available:

Your personal health history is an asset if you have to go to in an ambulance, to an ER or for hospitalization. You may not be in any condition to notify medical personnel regarding your treatment, so handing them your medical history can save precious time, avoid mistakes and be lifesaving. Remember that hospital staff may not be familiar with Myasthenia Gravis, so either you or your family/friends may have educate staff regarding the importance of understanding MG, especially when it comes to requiring anesthesia.

BE YOUR OWN HEALTH CARE ADVOCATE

Information is power.  Learn all you can about MG, be organized and speak up on your own behalf.

Click on this link for more informationSELF-ADVOCACY

KEEP AN MG DIARY
Your neurologist will want to know the details about your symptoms, when they occur and if there’s anything you can determine that might bring on the symptoms. S/he will want to know what reduces your symptoms, whether it’s medications, rest or something else. Your doctor will want to know about side effects that you might experience from taking medications as well. You might think that you can remember all this to tell your doctor, but the reality is that, your appointment goes fast and there isn’t time for you to tell a long story. Before your neurologist appointment, review your diary to select the most important issues to discuss with your doctor. There won’t be time for the doctor to read your diary so create notes to take with you.

SPEAK UP & BE PREPARED
You may never have thought of yourself as an assertive person, but your health depends on your willingness to speak up. There was a time when a trip to the doctor was not only a time for tests and results, but a time when you could actually get information related to your health and your questions would be answered. Due to tightly scheduled appointments, much of that has changed. Given the fact that you will have somewhere between 5-10 minutes with your doctor and you may see him/her only a few times a year, you must prepare. Besides issues related to your symptoms or medication side effects, write down questions related to how MG relates to other conditions you may have. Make sure you present all your questions before your doctor leaves the exam room. This is your appointment and you and your insurance company are dearly paying for it. You will never get all the information you need about Myasthenia Gravis from your physicians. Read about MG through various websites including the Myasthenia Gravis Foundation of America at www.myasthenia.org , and the Mayo Clinic at www.mayoclinic.com/health/DiseasesIndex/DiseasesIndex.

LIFESTYLE TIPS Click Here
The first step to managing your condition is to accept that you have it.  From then on you can move forward.  Click “Lifestyle Tips” above to learn helpful hints on day-today living with MG.

NEED A REFERRAL TO A NEUROLOGIST?
We do not recommend one neurologist over another however, if you live in Missouri or Kansas, we have a list of neurologists that may be helpful. This list was compiled by members telling us that they have confidence in the MG-knowledge base of their neurologist. We would be happy to tell you who is on the list based on your geographic area. If we do not have a neurologist listed in your area, or you live in another state, you could call the neurology department in your local hospital and ask if any of the neurologists are specialists in MG. Remember that the person answering the phone is the least informed, so you should ask to speak to the practice manager or a nurse for one of the neurologists.

 HOW TO FIND A MG-EXPERT NEUROLOGIST  Click here.

 

 


IMPROVING COMMUNICATION BETWEEN YOU AND YOUR PHYSICIAN
Click here.

 

EASY ACCESS TO YOUR MEDICAL INFORMATION IN AN EMERGENCY

Besides keeping a list of your medical conditions and prescriptions in your wallet and in the glove box of your car, consider downloading your medical information on a flash drive to attach to your keys or on your SmartPhone.  MG INFORMATION ON YOUR SMARTPHONE CLICK HERE