“Your blood pressure is high. Is that normal for you?”
“No, I don’t think so.”
“Are you nervous?”
I’ve never understood blood pressure, but I left the nurse’s station deciding on how nervous I might be. I didn’t feel that fluttery-stomach, sweaty hands, going to pee myself, job interview nervousness, but the word “normal” was haunting me.
I hate getting my hopes up, but every time I’ve had some test or appointment, my hopes are like a helium-filled balloon that I’m trying to keep from ending up in the sky. I was still holding onto hope, but I feared it would all be a waste of time.
I started with a chest X-ray. Although I didn’t mention it before, I had already had two of those. I went to the Respiratory Clinic where I got a breathing test (that I had done at least 4-5 times before).
“Based on what you’re telling me, it sounds like Asthma. And good thing, because the doctor you’re seeing specializes in Asthma.”
She was an incredibly kind respiratory tech and I was not going to pretend like she knew my story, but it was hard not to laugh.
When I finally got to see the doctor, I was thankful that she had already reviewed all of the tests I had done back home. She, like my other two doctors, had determined that my breathing problem was not my lungs or my heart after I shared my story and my main symptoms.
She started asking me a lot of questions about my whole health history, questions beyond respiratory issues, and she continuously wrote down tests or blood work that she was going to order.
She was especially interested in my fatigue and malaise that had grown to be so consistent and was concerned by how much it was impeding me from normal activity.
After she collected all of my data she came up with four next steps:
- MIPS/MEPS test to test my respiratory muscle strength
- Lots of blood work
“Based on everything you’ve told me, I would really like you to see Neurology and Rheumatology. If you can’t get both in before you leave, I really want you to see Neurology.”
I went to the scheduling desk and they couldn’t schedule me with Neurology until the middle of July. They said I could call later in the night or early in the morning to see if I could catch them with a cancellation. My hopes dropped, but I asked people to pray and for God to move in a big way.
The MIPS/MEPS test was exhausting and came back to show that my muscles were weak. They drew a lot of tubes of blood and I had no idea what they were all for.
I tried to enjoy the rest of my time in Cleveland, but by the time dinner hit, my husband and I were exhausted. We couldn’t quite enjoy the quiet night-life of the cute neighborhood we were staying in, but I’m learning to be content in listening to my body.
I called that night–nothing for Neurology.
I woke up and called that morning–nothing for Neurology.
“Wait one moment, let me check one more place.”
“I do have an opening for 10am at our Fairview location.”
My husband and I rushed to get ready and got to Fairview. I was trying to praise God for him opening that door wide open, but in the pit of my stomach was the constant thought: “What in the heck is a neurologist going to do for me?”
“What can I do for you?”
All I could do was laugh. Do I start telling him about anything that has happened in relation to my head? That doesn’t make any sense, I don’t think. But I figured my pulmonologist was adamant about sending me there for a reason, so I started from the beginning.
“What else?” he’d ask.
He recorded anything and everything I may have experienced out of the ordinary.
He did a physical exam of different neurological functions and gave me four steps:
- More blood work
- Brain MRI — More to check other symptoms I had mentioned but never considered as “symptoms”
- EMG — To check for a neuromuscular issue
- Neuro-cardio tilt table test (still don’t really know the real name for this)
“We may find something in the MRI or tilt test that is totally unrelated to your current condition.”
I was able to schedule the MRI back home and the EMG and tilt test on the same day in Cleveland.
Now, of course I’m not very patient and I tend to process things a little slower, so rather than asking what all the blood work and tests were for from both doctors, I just researched each blood test as the results appeared on MyChart.
Most of the blood tests were checking for different autoimmune disorders and other neurological possibilities. They checked for inflammation, they checked my thyroid, and they checked for specific anti-bodies.
Most tests said negative.
Always mixed emotions! I really don’t want to have a serious and life-altering disorder, but the more that is ruled out, the more I just remain normal.
I had a positive ANA test which could mean I have an autoimmune disorder, though it does not diagnose which disorder.
The more I started to research the blood work for the neurologist, the more Myasthenia Gravis (MG) started to appear. I even looked back to find that my EMG is testing for MG. I don’t know that I have many obvious symptoms for MG, but then again, I don’t know that my symptoms have pointed to any obvious disorder.
I’m still waiting on a local rheumatologist to call to schedule an appointment. This would be the fifth doctor I have to tell my story to, and my story only seems to be getting longer. I’m thankful I’m not alone in that, though. It’s amazing (and so heartbreaking) the medical mysteries so many of our friends and family members are still battling.
“At least they’ve ruled out serious things.” — A comment I’ve heard pretty frequently. And while doctors have ruled out cardiac and pulmonary issues, autoimmune or neuromuscular disorders don’t sound like a walk in the park to deal with.
I’m not sure how to deal with the new information I have. I really don’t want to be diagnosed with a life-changing disease, but I also don’t want doctors to keep telling me I’m normal. I’m not normal, but the reason why still remains a mystery.
In this season of waiting, I am learning to trust God. The beauty about suffering at any capacity, with God, is that suffering has a purpose. The purpose isn’t to make me stronger on my own–though that’s the typical worldview. The point of this season of my life is to reveal my weakness and need for Christ. The point of this season is for me to cry out for help and for God to show up faithfully. Suffering grows community and asks for sacrifice. Without this season I would not know the necessity of prayer. I would not know that our deepest communion with God is found in our naked vulnerability with ourselves, Him, and our community. If I have to keep going through this season to show more of who God is to people around me, then I’ll continue.