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Neely’s Story
Site created on February 25, 2019
In just a few short weeks, it will mark a year since I've been officially diagnosed with Myasthenia Gravis (March 2018). It took 14 months after I went to my PCP with complaint of "muscle weakness" in January 2017. I guess what my PCP heard instead was "chronic fatigue" and sleepless nights, not uncommon for a new mom weaning a 7month old and working full time. I remember telling her, "but I can't pick up and hold my baby easily" and still leaving with a prescription for an antidepressant for PPD and being too tired to question it and thinking I probably did need the antidepressant. There were other gradual signs like dropping EVERYTHING, being even extra clumsy than normal (I have a pretty high baseline level of clumsiness). I remember confiding in a speech therapist at work that I was choking on certain foods a lot. Despite being post-partum, I had been eager to get back to my love of running and it just wasn't going well... But to me, that was easy to blame on just having a baby and thinking my body was just not the same. The antidepressant chosen turned out to be a bad choice for me and only worsened my fatigue and generalized weakness substantially. So we blamed the drug. And it took grueling months to come off of it, all the while seeing psychiatrists who suspected a medical problem, not psychiatric problem causing my symptoms. Meanwhile, I was struggling at work being a nurse on a busy unit, and struggling at home being a wife and a mom. And I was trying my damnedest to rise above it and for no one else to see how bad I felt. Fast forward to the fall and I really started pushing hard that something was wrong and we had to get answers... I was finally ordered a brain MRI to rule out MS and a referral for an endocrinologist. The brain MRI was clean, no MS. Yay! What a relief. The endocrinologist was amazing... I cried in her office because she not only listened to me but she believed me. She said she would run every endo test but she suspected this was neuromuscular...to which my jaw dropped because in my mind that meant ALS. When my labs came back perfect , she referred me to a neurologist who specialized in neuromuscular disorders immediately. Almost exactly one year from my initial PCP appt for "muscle weakness", I saw my neurologist at the end of January 2018. He did his assessment and I thought it seemed normal but be didn't say. He was very interested in the fact that my muscles seemed to recover with rest and that I was much worse at the end of the day. At this point, my speech was becoming affected and I was slurring my words when I gave report at the end of my shift (I was so afraid my coworkers would think I was drunk trying to find report!) My vision was also horrid and was going double often but I just thought I needed a new contacts/glasses prescription. That first appointment, he said "were going to run a lot of tests, but I think you have Myasthenia Gravis" to which I promptly said "Myasthenia what-is"? The words jogged my memory of a slide or 2 in nursing school but I had honestly no recollection of what it was and I had never come across anyone with MG. The next month and a half were filled with blood tests and painful EMGs (who knew needles in your muscles sending electrical shocks didn't feel nice?) ... I started to panic as everything was coming back normal but my symptoms were worsening. Of course, having done my research, I knew that the more that was "ruled out", the more the diagnosis would point to ALS. It seemed like the elephant in the room during those neuro appts. So when I was sent to Emory for a single nerve fiber EMG (there's only a handful of these machines in the country and Emory had one 🙌), I was quietly panicking that I had ALS and only so long to live. When the Emory doctor diagnosed me with Myasthenia Gravis within 15 minutes of the test, I felt so much relief! I had a diagnosis! I wasn't crazy! It wasn't ALS! I wasn't going to die! Google said MG was mostly a chronic illness I could live a pretty normal life with! I could start mestinon immediately and get some relief! I knew I'd be fine... I'd overcome a lot in my life, this was going to be no big deal ... Especially now that I had a diagnosis and treatment plan. Boy, I had no idea! I'll tell more stories later ... There's quite a few. But despite being on aggressive treatments, I am considered to have a severe and refractory form of MG. A rare form of an already rare disease. I have been in "myastenia crisis"- intubated and on a ventilator from my respiratory muscles weakening several times... So my MG has been life-threatening. Only approx 20% of MGers ever go into crisis in their lives. My MG was quickly proving to be formidable. Jonathan and I have watched my quality of life steadily and gradually decline despite continually maximizing and adding treatments. But in no way are we giving up the fight! So, I will be posting updates here for all of you lovely people who have been so supportive and our life lines through all of this. We cannot express enough how your prayers, cards, phone calls, meals, monetary donations and gifts, help with Ava, and unconditional love have gotten us though this year and given us so much strength. I promise to be more diligent about posting updates here and keeping in touch. I will admit that sometimes I just don't have the energy to... But I also am starting to see where it could be therapeutic for me as well. We can only hope and pray that this awful disease will go into some kind of remission and this page won't be necessary at all! I will devote an entire post to what exactly Myasthenia Gravis is... For those of you who love to learn about the body and medicine and how it works. It's a very interesting disease process. I never loved neurology (cardiology was always my thing!) But I've learned so much now. Love to all of you... So much love! Neely
*UPDATE* thanks to my awesome sister for making the post and staying with me while Jonathan stayed with Ava and kept her from knowing anything was going on other than "mommy had to go to the doctor" .
I'm home sweet home after managing to convince the amazing neuro ICU that I felt like I was out of the danger zone and had enough supportive care to go home to recover and finish PLEX
outpatient. As scary as it was to feel like I was suffocating in the ambulance (I have respect for many a first responder but not those guys), I hope that was my last time in an ambulance, ever. I hardly remember anything about the ER but my sister said a nurse who had a friend with MG happened to be on and quickly took over and treated me seriously & MG-appropriately.
I'm both frustrated and humbled that a stomach bug could put me in the ICU but I am also very encouraged how fast I was able to recover and re-stabilize with just BiPAP and other medical interventions. That must be big progress in this disease.
And also thank you for all the many prayers, I know they made a difference.
I love all of you and still reading your comments on my last post and so encouraged and feel so loved by you. You keep my head above water so much of the time.
This Steffi, Neely's sister. Neely went to the ER last night around 1am after catching Ava's stomach bug. She got so weak from vomiting, her body wasn't strong enough to keep breathing. Fortunately, the ER staff were quick to put her on BiPap and while at they initially thought she would need to be intubated, she responded well to having the respiratory support from the BiPap and we seemed to have prevented a full blown crisis.
They moved her plasmapheresis to today, so pray the BiPap and plasmapheresis do the trick, and that she can come home soon.
