Next Round
It's taken me a little time to circle back and write an update about our latest visit to Cleveland Clinic at the end of June to see a new neuromuscular specialist. To be honest, it's always an emotional rollercoaster: the equivalent of prepping for a first date and bracing for a gut punch at the same time.
Overall, we liked this doctor. She asked insightful questions, and seemed to want to understand as much as possible. She agreed from the get-go that most of my worst symptoms do not seem to be related to my small fiber neuropathy, which we've been feeling for months. She also suggested almost immediately that I might have some autonomic dysfunction, which is one of the things I'd hoped to discuss with her.
We left the hour-long (plus!) appointment with a list of homework and follow-ups. She wanted to evaluate for autonomic dysfunction and revisit the possibility of myasthenia gravis. She said she didn't have a strong suspicion of myasthenia, but given my symptoms, it seemed wise to re-evaluate. She is now the sixth or seventh provider to suspect myasthenia gravis! My last round of testing was in 2018, and all negative. She plans to repeat my EMG, in addition to autonomic testing and repeating my biopsies for small fiber neuropathy (all of which will take place in person at Cleveland in October). She advised following up with my local neurologist to order a lab work-up for myasthenia gravis. For my dizziness and other blood pressure/pulse-related symptoms, she advised wearing compression stockings as much as possible; drinking water with electrolytes; returning to physical therapy for vestibular therapy for my dizziness; and checking my vital signs over a period of three days lying, sitting, and standing. For my joint (specifically, hip) pain and weakness, she advised going to my primary care doctor (who ordered a round of steroids and further tests, if needed, for bursitis and/or IT band inflammation). Then we'll follow up virtually in late-October.
It seems a little funny to have come full circle on myasthenia gravis, in particular. In our first rounds of testing, this was the diagnosis we hit hard. It just made the most sense! But every test was negative, and after speaking with two or three neurologists and going through the work-up, it was essentially ruled out. It still comes up often in initial visits with providers, but no one has yet gone back to retest. Of all the many awful things that have been on the table these past few years, it seems quite livable. I'm also relieved that she will be looking for autonomic involvement, as I've felt I have many symptoms that indicate my autonomic nervous system has been impacted, if nothing else, by my neuropathy. My at-home vital signs didn't show significant signs of my blood pressure dropping in different positions, but reflected my high heart rate and some changes with position. I'm hopeful that those, paired with the other symptoms we discussed in person and my testing in October, might reveal a little more. But, as always, I'm also bracing for another round of negative tests, a comment or two about being a medical mystery, and more limbo as we wait for the symptoms to progress enough to move on to the next level of testing.
In the meantime, my health has seen some ebb and flow. I had some really great weeks with improved energy and reduced symptoms. For the past week or so, I've struggled a little more. If you've bumped into me around town, depending on the day (or hour!), you might have seen me out with my trusty cane again. Some days I need it, and some days I can get by without it. We've had some very busy, stressful weeks, which are always a detriment to my symptoms. We're learning that this is the nature of this disease, and I'm leaning into things that can help me save energy before I become depleted, like the cane and wheelchair and daily naps.
So we're in the in-between space again! I vacillate between being encouraged by the visit, hoping it might yield some answers, and dreading the possibility of no further answers. Thank you to all of you taking it a day at a time with us and walking this road (on foot or on wheels). Maybe someday we'll know what this is. I'm reminding myself often these days of the moment when I felt God whisper, "I know what this is." He still holds this firmly in his hands and knows what we're dealing with, and he will reveal it in the right time. Meanwhile, we'll keep living it out as fully as we can (even if living fully means crashing on the couch!).
