My MG Journey

I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than all the other kids. I liked school though as I got good grades. In high school I was able to do some sports like swimming and dancing which I really enjoyed for the first time.

Something wasn't right

My first pregnancy almost killed me. I was in bed for months before and again after the birth. I then alternated between working and months in bed. Dr thought I had lupus. I’d save money working and then spend it when I was in bed and couldn’t work. I usually passed out in public and would wake up with people standing over me. That’s what always sent me back to bed for months. I had to give up my driver's license; I later got it back. Through all of that, I always maintained a positive attitude.

When I was 42 I passed out while driving and had a major auto accident. I went through physical therapy for 3 years and a rheumatologist’s treatment for lupus with steroids and a malarial med. I earned my driver's license back again along with a master’s degree and went back to work, but my arms started shaking and I got really thin. I started passing out again in public and had to stop working for good as I noticed I couldn’t focus my eyes on text and I couldn’t control my left hand to type.

A painful progression

I always had migraines since I was a young adult, but now I got 5 types of headaches that were excruciating and didn't respond to medicine. At the same time I had to stop driving for the last time as my retinas peeled in both eyes and I had to have three eye surgeries. So I had to stop working for good as life was just too painful literally. I was 55.

This or That

Which is harder to manage for you, pain or fatigue?

I walked as much as I could but I still kept passing out in public. I was put on an anti-epileptic drug and a neuro drug as my Raynaud’s got out of control again and I developed neuropathy. Numerous rounds of physical therapy showed my skeletal muscles continued to weaken. My disability application of 3 1/2 years was finally approved and I repaid my adult kids out of the retroactive payment I received. They helped me financially during that time as I had exhausted my retirement savings yet again.

Finally figuring it out

Now? Well I finally got diagnosed with myasthenia gravis(MG) 5 years ago. It was 1 month after I had been diagnosed with Parkinsons for a left hand resting tremor, slow gait, and small handwriting. I went back for a follow up appointment the next month and still had essential tremors. The doctor ordered a MG antibody blood test and that’s how I finally got diagnosed. Dr said with my symptoms since childhood I probably always had MG. I’ve been on the same low dose of Pyridostigmine and Ropinerole for Parkinsons since, in addition to the same anti-epileptic and neuropathy drugs.

I consider myself fortunate as my flares are controllable. I have breathing and swallowing issues which caused me to lose my singing voice, and neck weakness. My eyes get tired often, especially my right eye which just temporarily lost its vision this summer with a blood clot. So now I have stroke risk and am on a statin and aspirin. MGers aren’t really supposed to take statins but weakness is better than a coronary event. I think. A breathing crisis is probably the same risk.

Lessons learned

My philosophy has always been that life is short. Enjoy it, count your blessings and be grateful. Thank God daily and read his message, the Bible. Be kind to others. Stop and smell the flowers. Eat candy, fudge, pie, whatever makes you happy. You can walk outside and get hit by a car or have some kind of accident, so if you get sick and pass, it probably won’t be as painful as those. I always tell my kids “May you grow to be as old and ugly as me, cuz then you’ll know you did it right. The alternatives are accident or murder and they’ll hurt”. Blessings to all.

Inspired to write about your own rare disease journey?

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.