Finding the Right Doctor Is Key to Good Long-term Care

Megan Hunter avatar

by Megan Hunter |

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Disease burden

Choosing your healthcare provider can be as important and daunting a challenge as finding your life partner. You need someone who will advocate for you and who has your best interests at heart. You need someone who is passionate about what they do and who wants to make a difference.

Your doctor needs to believe you, as well as believe in you. She needs to realize that you probably will never be an average patient and you may cause more gray hairs than most of her other patients. She needs to be willing to go that extra mile for you.

I am on a first-name basis with my doctors, their receptionists, and nurses. I have their cellphone numbers so I can call about urgent situations or with updates. I owe my life to them.

My doctors search the globe for a treatment to improve my quality of life. They advocate on my behalf with my health insurance company. I receive weekly after-hours phone calls to check on my progress. The entire staff at my doctor’s office sang to me on my birthday.

Do your research when you receive your diagnosis or when you move to a new area. Ask for recommendations from your support group. Visit different healthcare providers, and if you don’t “click” with them, move on. Don’t stay because you feel guilty about going elsewhere. You are No. 1 — and you deserve proper healthcare.

I had been with the same doctor for over 10 years, and I loved her. Then I had to move to a different province, and I was afraid I wouldn’t find another doctor who would measure up. I initially saw a neurologist but realized I needed someone more involved. So, I did some more research and found a professor in another province who was knowledgeable about myasthenia gravis. She referred me to a doctor close to where I live.

I have never been happier. I often wonder if I would still be here if I had allowed my life to be controlled by someone who seemed to have no interest in my quality of life. Do not let this be you. Keep fighting. Find “the one” — and never give up.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Karen avatar

Karen

My dearest friend’s daughter is suffering from myasthenia gravis. Where is the best place for her to be in the states. Right now she’s in central Jersey and not doing well. Any help will be appreciated.

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Megan Hunter avatar

Megan Hunter

Hi Karen. I live in South Africa so am not sure who to recommend, but I will ask on my worldwide support groups. Sending love x

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Pauline Djonovic avatar

Pauline Djonovic

Hi- I live in New York City and also suffer from myasthenia gravis. I am looking for a specialist (does not have to be in New York State— am will to travel), but that specifically specializes in myasthenia gravis; in other words, not just a normal neurologist. Let me know if you have anyone in mind!

Reply
Gregg L. Friedman MD avatar

Gregg L. Friedman MD

Excellent story on Myasthenia Gravis. Thank you for publishing this information. 5 Stars. By Gregg L. Friedman MD

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Sherri Dudek avatar

Sherri Dudek

I'm very very sick very weak and I've had my second Myasthenia crisis in less than a year. I'm 64 years old and it was discovered four years ago sometimes I can't even open the door knob to the bathroom. The bottom line is I need a doctor and I'm on my fourth one that told me they know about myasthenia gravis but they don't. I live on the Jersey Shore I'm about an hour from New York City I know little more than that to Philadelphia. Can anybody help me so I could have a few more years with my tiny grandchildren. Thank you so much for any help you could offer me. You can text or call me at 732 604 9424 or [email protected]
Com. You have no idea how grateful I would be God bless you all to be healthy and safe and all those you hold near and dear to your heart.

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