Neuro News
First of all, thank you to those of you who texted, emailed, messaged, prayed, and otherwise "went with us" to the appointment with the neurologist yesterday. If the poor doctor only knew how many people were thinking and praying about his hour with me, I think he would have been surprised! The appointment went incredibly well. We saw a resident first who was wonderful. She took a really thorough history, asked great questions, and was one of the most sympathetic people we've encountered yet in this process. As I was describing the different tests and host of doctors I've seen, she looked up and said, "Wow, you guys have been through a lot in the past few months. We're going to follow through here and get you some answers. We'll keep digging until we figure out what's going on with you." After being turned down by my previous neurologist, her words really meant a lot!
After her initial assessment, she went out to consult with the neurologist, then they returned together. They went over every single lab and test and appointment I've had so far--we were with them for an hour and a half!--and were incredibly thorough. The doctor assessed me and confirmed that there doesn't seem to be anything wrong with my brain or my spine. He also didn't feel my symptoms align with MS (multiple sclerosis), which is his particular area of specialty. He said, "It seems like your problem has more to do with the neuromuscular junction, the connection between the nerves and the muscles. I suspect we're looking at something along the lines of myasthenia gravis or a related disease. I have three colleagues who specialize in those diseases, and I'm going to go speak to them now and figure out how we can make a plan for you and bundle this all up nicely to get you some answers." I can't describe how comforting it was to encounter a doctor who--mind you--still didn't have answers for us, but who didn't throw up his hands, joke that I'm just a "medical mystery," and overthrow us to the next doctor. It felt very much like he was going to hold our hand and get us to the next step, without letting us slip through the cracks. He left the room not once, but twice, to consult with another neurologist. In the end they planned to have me come back on May 2 to see that doctor for a single fiber EMG and repetitive stimulation. Although all of my labs have been negative, my symptoms seem to indicate I have something like myasthenia. Stimulating the nerves and muscles over and over will mimic the fatigue I feel when I use the muscles, and should help us get to a diagnosis. Overall, the appointment could not have gone better.
As far as myasthenia gravis (I'll say MG from here on out), I'm actually very relieved to hear them throwing the name around again. Back when my first neurologist suggested it as a possibility, it seemed to make sense of my symptoms. Interestingly, although at first I hadn't felt that MG was likely, for some reason I kept circling back to it as I read up on symptoms before all of the appointments began, as if there was something about it that just fit. When the initial labs somewhat specific to MG came back negative, no one seemed to think it could still be that; although in what I had read up to 15% of people could have negative labs and still have the disease. The doctor yesterday confirmed that. And if I'm going to fall into any percentage on something, it will always be the smallest percentage! I never seem to be one to fall into the majority of anything... MG itself is very rare. From what I've read, they estimate between 30,000 and 60,000 people in the US are diagnosed with it. So I'm grateful to be sent to a specialist who has experience with a portion of that population! The disease would be lifelong and require lifelong medication, but it would not have the likelihood of impacting other systems like bowel and bladder, brain, heart, etc. That, in itself, would be a tremendous relief!
My mom traveled down with me, and we made the most of our day together. We talked and laughed on the way down, and I joked that it was too bad we had an appointment in the middle of our day to cut into our fun. She packed a myriad of healthy snacks so that I could eat small amounts throughout. It was a wonderful day. After the appointment, we headed over to IKEA for some fun--this time on wheels. The chair was an adjustment for both of us. I'm not used to not being able to move around on my own, and she's not used to having to account for where she's left me. After a few times of pointing out things that were behind me, popping me into spaces "just so you can see," and leaving me mid-aisle, we got the hang of it amid lots of laughter. As I was being wheeled through the store, I realized just how far I had walked when I was with Micah. No wonder it had nearly done me in! The wheels may be my saving grace so that I can keep up with the activities and fun of family life. Plus, as they say, they're red.
After her initial assessment, she went out to consult with the neurologist, then they returned together. They went over every single lab and test and appointment I've had so far--we were with them for an hour and a half!--and were incredibly thorough. The doctor assessed me and confirmed that there doesn't seem to be anything wrong with my brain or my spine. He also didn't feel my symptoms align with MS (multiple sclerosis), which is his particular area of specialty. He said, "It seems like your problem has more to do with the neuromuscular junction, the connection between the nerves and the muscles. I suspect we're looking at something along the lines of myasthenia gravis or a related disease. I have three colleagues who specialize in those diseases, and I'm going to go speak to them now and figure out how we can make a plan for you and bundle this all up nicely to get you some answers." I can't describe how comforting it was to encounter a doctor who--mind you--still didn't have answers for us, but who didn't throw up his hands, joke that I'm just a "medical mystery," and overthrow us to the next doctor. It felt very much like he was going to hold our hand and get us to the next step, without letting us slip through the cracks. He left the room not once, but twice, to consult with another neurologist. In the end they planned to have me come back on May 2 to see that doctor for a single fiber EMG and repetitive stimulation. Although all of my labs have been negative, my symptoms seem to indicate I have something like myasthenia. Stimulating the nerves and muscles over and over will mimic the fatigue I feel when I use the muscles, and should help us get to a diagnosis. Overall, the appointment could not have gone better.
As far as myasthenia gravis (I'll say MG from here on out), I'm actually very relieved to hear them throwing the name around again. Back when my first neurologist suggested it as a possibility, it seemed to make sense of my symptoms. Interestingly, although at first I hadn't felt that MG was likely, for some reason I kept circling back to it as I read up on symptoms before all of the appointments began, as if there was something about it that just fit. When the initial labs somewhat specific to MG came back negative, no one seemed to think it could still be that; although in what I had read up to 15% of people could have negative labs and still have the disease. The doctor yesterday confirmed that. And if I'm going to fall into any percentage on something, it will always be the smallest percentage! I never seem to be one to fall into the majority of anything... MG itself is very rare. From what I've read, they estimate between 30,000 and 60,000 people in the US are diagnosed with it. So I'm grateful to be sent to a specialist who has experience with a portion of that population! The disease would be lifelong and require lifelong medication, but it would not have the likelihood of impacting other systems like bowel and bladder, brain, heart, etc. That, in itself, would be a tremendous relief!
My mom traveled down with me, and we made the most of our day together. We talked and laughed on the way down, and I joked that it was too bad we had an appointment in the middle of our day to cut into our fun. She packed a myriad of healthy snacks so that I could eat small amounts throughout. It was a wonderful day. After the appointment, we headed over to IKEA for some fun--this time on wheels. The chair was an adjustment for both of us. I'm not used to not being able to move around on my own, and she's not used to having to account for where she's left me. After a few times of pointing out things that were behind me, popping me into spaces "just so you can see," and leaving me mid-aisle, we got the hang of it amid lots of laughter. As I was being wheeled through the store, I realized just how far I had walked when I was with Micah. No wonder it had nearly done me in! The wheels may be my saving grace so that I can keep up with the activities and fun of family life. Plus, as they say, they're red.
