My Myasthenia Start

I was an Army Reservist and a nurse. It started in fall 2016 with extreme fatigue, I mean bad, I worked night shift for years, had deployed, done 24hr duties then worked a shift, but this was a tiredness I couldn’t explain.

Could it be menopause?

I was 43 and thought I was the right age for peri-menopause. I still went to my PCP and he checked my thyroid and everything was normal, but he agreed probably peri-menopause.

He had me go off of nights and start taking black cohosh and we went forward. My unit was spinning up for deployment and I was higher on the food chain, so I was working 50-60 hours a week as a nurse and then doing the Army thing of e-mails, conference calls, and text messages on my off time. Plus maintaining the house, cooking meals, grocery shopping, etc., and staying in physical shape for the PT test of course.

More symptoms led to more medicine...

Then I start noticing I was forgetting things and I started gaining weight for no reason, and my fatigue was still there. I pushed it aside for the most part for the rest of 2017 and into 2018.

I go back to my PCP, he runs more tests, and again everything comes back normal - in fact I have amazing results. I am very healthy according to my labs, but he can also see the fluid, so he prescribes Topamax to maybe help and see if it lowers my weight. And I start seeing him monthly for weight checks. While still working full-time, I went on 2 missions overseas and came home. Then, we continue forward.

My weight came down a little then plateaued and then started to go back up so he added phentermine, and in 2019 while I was in Germany I had so much edema it was on the bottom of my feet that it hurt to walk. My PCP put me on Lasix and ran more tests. I still noted tiredness but had started to notice the tripping on things - I just hadn’t told him yet.

Even more symptoms

I also was having random tingling in my hands and feet but again hadn’t told him. In the winter of 2019, I did the Army’s Cold weather survival class and it was then that I really realized I needed to say something to my MD. I kept tripping and falling, couldn’t carry my pack, and was struggling in areas I had never struggled in, in over 20 years.

I still passed the course, but not as well as I should have given my physical fitness level. As soon as I was done with the course I went back and saw my MD and this time we also checked for lyme disease because I went to Ft McCoy, WI a lot.

Finally, sharing it all

I told him everything. The memory loss, the loss of feeling, the numbness in my hands and feet, the loss of taste and smell, just everything. And how it came and went sometimes. He ran a bunch more tests and referred me to my first neurologist and an infectious disease specialist to check for Lyme disease.

In 2020, Lyme disease got ruled out. The first neurologist did a memory check, now here is the other frustrating thing I had an eidetic memory before this, and said I scored a 27/30 and I was within normal limits but still scheduled an EEG.

Then COVID hit and my unit got mobilized. I got sent to NY for 3 months. And when I came back pick back up. I then started having shortness of breath and I continued with more fluid. My PCP then sent me to a cardiologist, rheumatologist, and neurologist, the cardiologist everything was perfect I have the heart of a 15-year-old.

The rheumatologist told me I have an elevated ANA and C reactive, but otherwise, they can’t find anything and the second neurologist told me it was just my PTSD acting up and to go to the VA. None of this sat well with me or my MD so we went to Endocrinologist and he again said, “everything is perfectly normal, you are very healthy.”

Still, no answers!

By this time I had headaches that didn’t go away, joint pain, and muscle aches, I felt like I had the flu 24/7 with numbness and tingling and weakness, and everything was slurring my speech and mixing up my words. I felt like I was going crazy.

I retired after 28 1/2 years in 2021 from the military with everything going on and I just didn’t have the energy to do a PT test. And I just couldn’t even work as a nurse either.

A new neurologist

Around Christmas time in 2021, I noticed a tightening in my throat, almost like I had strep throat, but I couldn’t swallow my spit, and started coughing uncontrollably. It scared me. I had to adjust my diet I had an appointment with my PCP right after New Years and told him the new symptoms. He sent me to yet another neurologist that I got into within 2 weeks.

So we went to this neurologist with the same skepticism as we had become accustomed to over the last couple of years, she ordered a bunch of blood tests and a bunch of imagery and an EMG. Which was more than the last 2 - definitely more than the second one which just bombarded me with questions and did a couple of sensory and strength tests. Then she said it will take about 2 weeks for the tests to come back I will see you in 3.

The right diagnosis

And it was one blood test, one stinking blood test that no one else ran, my Acetylcholine was high. That single blood test, plus she did a full cancer panel, and a full spinal/brain CT with contrast imagery. So on March 10th, 2022 with full confidence my neurologist was able to tell me with 100% certainty that I wasn’t crazy, that I had myasthenia gravis and started me on the oral meds right away because I was having shortness of breath and swallowing difficulties.

She has already pushed for infusions to get approved, I have had my thymectomy and plasmapheresis and she had a port placed so I don’t have to get stuck all the time. And my amazing husband of over 27 years is still with me, my PCP stuck with it and no I wasn’t crazy.