For anyone newly diagnosed with Myasthenia Gravis, or for anyone who has been diagnosed, but has never viewed the Myasthenia Foundation of America’s website, I’d highly encourage you to do so. You can view it at:
This website is full of material for both people with Myasthenia Gravis and for their families, friends and caregivers. There are sections on:
- Understanding MG
- Living with MG
- Treatments
- MG Research
- MGFA Events & Webinars
- Support the MG Community
- About MGFA
I particularly like the section on Living with MG because it provides tips on living after your diagnosis, finding support and medical experts, MG emergency preparedness, and educational resources and assistance. If you click on the Living After Your Diagnosis tab, you can even request a patient packet which is filled with information about MG.
I remember when I first got my patient packet, I was surprised to find a brochure I could give to my dentist about MG. I hadn’t really thought of my dentist needing to know that I had MG, but the brochure made me aware that my dentist needs to take special care when doing procedures. They need to avoid certain kinds of numbing medications because they can make my MG symptoms worse or even trigger a myasthenia crisis. I found plenty of other good information in my patient packet as well.
On the website, there’s even a Seronegative MG Resource Center for patients like me who are seronegative. MG can be a real challenge. Not only do we frequently experience “snowflake” symptoms, but the difficulty in diagnosing MG can make us question our own sanity. I’ve shared my story in prior blogs where after countless blood tests, I continued to show negative to all the known MG markers, yet I continued to have symptoms. It was only through working with a very competent and knowledgeable neurologist that I was finally able to get diagnosed and placed on a treatment regimen that actually helped.
If you have MG, you’re not alone. It may be considered a rare disease, but there are hundreds of thousands of us out there, many of which are willing to help others along their path with MG. If you haven’t already done so, check out the MGFA website. I promise you’ll no longer feel alone in your battle.
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Thanks again, enjoy your Sunday and stay #MGStrong!
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