The following is the fourth and final part of The Long Road to Diagnosis – My Own MG Story.
(If you missed the beginning, it started here.)
So at the end of Part Three, we left off with my primary care physician (otherwise known as The Soup Nazi from the TV show Seinfeld).
She may have suspected that I had MG, although she never specifically said it. She did say in her thick accent, “I think you have… maybe… not MS… but something like MS. But you need to see a good neurologist to figure all of this out.” She was right about that!
She referred me out for several things. My heart was doing all sorts of weird things (confirmed on tests) and I was eventually diagnosed with Postural Orthostatic Tachycardia Sydrome (POTS). (more red flags)
What I didn’t know then, is that everything about that last childbirth experience, from the massive stress surrounding the experience, to the surgery itself, to the massive amount of useless pain killers I was given in the operating room when my spinal block failed – were all circumstances well known to drastically aggravate MG. My neurologist believes that I had MG all those years, but it took the events of that day, to trigger my symptoms into a much more severe form. Because it wasn’t until Ella’s birth that things became much more serious.
After getting sent from doctor to doctor and neurologist to neurologist, I had finally landed with one that was familiar with MG. He later told me, that he knew the very first day he saw me, that I had MG. But he didn’t tell me that the first day.
After various forms of evaluation for Myasthenia Gravis, I received an “official” diagnosis from him in early 2011, at the age of 33.
I left “The Soup Nazi” primary doctor when her office decided that anyone with a chronic illness would be required to see her every 3 months, and would be required to sign a new patient agreement saying they would do so. I told them, “I don’t like going to the doctor and I don’t go unless there is a reason to go. There is no way I am going into a doctor’s office to catch germs every 3 months unless there is a valid reason.” They said there would be no exceptions for anyone (even those who are supposed to avoid germ-filled places), so I left the practice. They didn’t want me to leave, but I cannot be convinced to go to doctors for no reason.
I’ve often unintentionally went to useless appointments (LOL) – but I have never purposely attended a useless appointment!
I’ve heard that she retired this year. That’s probably for the best, as she was at an advanced age and it seemed that working was very physically difficult for her. Perhaps that’s why she was grumpy. Regardless of her eccentric bedside manner, I will forever be grateful to her for sending me to a knowledgeable neurologist.
I found a new primary doctor early last year, who was fresh out of med school and working intern rounds. But I liked him. He knew a lot about MG. Far more even, than the first neurologist I saw. Perhaps, because it was fresh in his mind from med school and he hadn’t had time to forget it yet! I had low expectations after my past experiences, but I ended up liking him a lot.
My orthopedic, not the one that messed up my post-op care for my ankle (from what I’ve heard, he retired after one too many screw ups), but the orthopedic I’d been seeing as an adult – for my broken leg, and for my foot breaking episodes – he actually turned out to be very knowledgeable about MG and quite helpful to me post-diagnosis.
My symptoms have continued to progress, and life is pretty tough on many days. But I love my family and I will fight to be here with them for as long as I can. I still pray and hope for remission.
My situation is complicated greatly by the severity of my allergies. What I need for one condition, messes with the other. The two conditions interfere with each other constantly, on a daily basis. But they are both a malfunctioning of my immune system.
For my story, I purposely focused on the long road to diagnosis, because there are many people with MG that go years without diagnosis. That can be a very bad thing. Because it helps to know what is happening to you. And there are many things that you should and should not be doing/taking/etc. if you have MG.
The sooner a person knows they have MG, the sooner they can live their life in a way that is the safest for them.
While I can understand that the similarity of symptoms to other conditions can cause diagnostic confusion, once I began having intermittent vision issues, and speaking/swallowing issues, someone should have figured out what was going on with me, or at least considered MG as a possibility.
It’s a shame that it took me getting much worse, for someone to even evaluate me for Myasthenia Gravis. And these are reasons why we desperately need increased awareness about this disorder.
Everything about my symptoms and my past medical history were pointing straight at MG and it took my quality of life getting extremely worse, and me being sent to multiple doctors and multiple neurologists for someone to finally think to check me for MG. And all it took in the end, was landing with one neurologist, who was familiar with MG. Then suddenly I received a proper evaluation, and finally had an answer for everything and everything made sense.
It wasn’t fun news to get. But trust me - it is better to know what you are fighting!
Many of us with MG have a long road to diagnosis. Hopefully, as we all do our part to help raise awareness, maybe that could mean one less person goes through the sorts of delays that come from dealing with medical professionals who have no experience with this autoimmune neuromuscular disease.
Now, if you managed to make it through all of this, you’ll have an idea of why I hate talking about it. :)
People find out how sick you are and they start viewing you as a broken person. (And I didn’t even go into all the ways that MG currently impacts my daily life, partly because I don’t want to be viewed that way.)
For the record: I hate pity. There are a lot of people in this world worse off than me. So please don’t pity me. I do appreciate understanding. I am the same person that worked 60+ hours a week and did 5,000 other things I can no longer do. I’m probably a little wiser, but I’m the same person.
I am not a broken person.
My muscles my be weak, but I am strong.
During the toughest moment of my life, I laid on a table and told doctors to cut my baby out of my belly with no working anesthetic. I refused to let them put me under general anesthesia when my spinal block failed. The reason I did this is because the last time I had general anesthesia (non-childbirth situation) it didn’t go well – at all. And when that spinal block failed and I was feeling everything, I immediately knew that I was unwilling to take the risk of something bad happening to my baby, so that I could be out of pain.
The surgery lasted approximately 45 minutes (due to scar tissue from my previous surgeries). It felt like an eternity of hell on earth. But, I prayed to God and he was with me. I had an experience in that operating room, part-way through that surgery, that solidified my faith forever. During the most traumatic moments of my life, I prayed, and I experienced a peace beyond all understanding – in the middle of a nightmarish situation.
Maybe someday I’ll tell you more about that day. It is still difficult for me to talk about. The hospital tried to convince me to take an “amnesia drug” that they said would make me forget the prior 8-10 hours. Because they felt that what happened in that operating room was so traumatic that one might not be able to handle it in the weeks and months that followed.
I was calm, but they warned me about the likelihood of nightmares, flashbacks, and complications going forward. But I refused the drug. And yes, I did eventually end up with some complications they warned me about, but I don’t regret my decision. I would make the same choice to get her here safely all over again. And I would still turn down the “amnesia drug”. I didn’t want to forget my daughter’s birth, however rough it may have been. And I didn’t want to forget what God did for me that day.
My husband held my hand through that entire surgery. So it doesn’t pay for anyone to call me weak in front of him.
For he will quickly tell anyone, that I am the strongest person he has ever met.
I consider that quite a compliment coming from a man who has fought for our country in two wars.
I’m not telling you that, to act as if I’m some great thing. I’m not. I am just a person, like anybody else. But I want you to understand that I am not weak.
Don’t underestimate people with MG.
Don’t underestimate me,
for I am not what my muscles can do.
I am the person that God made me to be.
Even if this MG takes my life, my soul will live on. I will fight with everything I that have, to be with my children as long as possible. I am far too stubborn to give up. But someday I will be free from the pain and all of the struggles. So if I die today, or if I live to be 80, don’t mourn me when I am gone. Laugh about all of the dorky and silly things I did. Remember how much I loved life, and loved my family, and know that when I am gone, I am in a better place.