Seeking Diagnosis Through Remote Care

Painted fern like leaves in a dark green on the bottom, with text in coral "Undiagnosed" in top right corner

In a matter of weeks the world as we know it has completely changed. Trying to navigate through it all brings to light challenges we didn’t recognize, and forces us to look more inward as we face the challenges ahead.

Facing this global crisis in the midst of my busiest medical care months (and a move) presents it own unique barriers.

Roughly a year ago, I found myself in the hospital finally getting closer to an answer regarding my undiagnosed, severe abdominal pain. No answer would ever come, as doctors were more dismissive and lifestyle changes were successful in vastly reducing the digestive discomfort.

Over the next 12 months, I’d find myself continuing my fight with migraine, discovering I have very mild Scoliosis, and playing a guessing game with a whole host of symptoms:

  • nausea
  • digestive issues/abdominal pain
  • widespread chronic pain
  • increased brain fog and cognitive impairment
  • carpal tunnel complications?
  • potential Lyme disease

A lot of this didn’t lead to much. We ruled out Fibromyalgia, Lyme tests were negative, and so on.

But as winter turned to spring, suddenly everything seemed to be going wrong.

In mid-February I had a sudden shock of pain in my hand, that eventually went from an occasional electric shock to constant widespread pain that prevented my hand from opening all the way. I presented this to my neurologist who I saw at the beginning of March. He agreed it certainly wasn’t carpal tunnel – the pain and location was just different. We had X-rays done on my hand, specifically focusing on the joint for my index finger. These came back normal, and my doctor wanted me to continue my follow up care with a Rheumatologist.

Had I continued with my move – you know, if the virus wasn’t around – I’d have seen my brand new doctor today and would be off to see a Rheumatologist within the next month or so.

But, alas, I have to resort to at home management of a hand that simply doesn’t want to work all that well. There is some noticeable swelling, and perhaps “swollen” is the best way to describe the pain that extends through my fingers, hand, wrist and some days up into the ball joint of my shoulder.

As the hand pain got remarkably worse, I was met one morning with one of the more terrifying moments of my life.

One moment I was waking up like normal, making my way to the bathroom. The next I was turning on the light and suddenly the room started to spin. I tried to pee, thinking maybe a bad migraine was coming over me, but nothing came out. I began to get incredibly hot, feeling like the room was closing in around me, the lights only making it worse. As I reached for the light to turn it off I blacked out. I was still standing, my eyes were open but I couldn’t see anything and the television like static in my ear was drowning out the world.

I managed to guide myself back to my bed, where I could tell I was sweating profusely, and just laid there trying to breathe. Eventually it passed and I felt completely fine.

I had only just days prior been piecing together some symptoms I’d had for years – nausea, vertigo, dizziness, temperature regulation issues, heat intolerance, migraine, and so on – as a link to a condition called dysautonomia. Often a diagnosis of POTS is the most common. And suddenly, here I was having what is commonly known as a vasovagal syncope episode. (Some of you may have had these unfortunate near fainting episodes while also trying to use the bathroom, it’s relatively common but doesn’t happen with a high frequency.)

And it was terrifying. Even having the tools to research and monitor my own health to find out if this diagnosis fit best, I was unsettled and distrusting of my own body.

Over the next month, I recorded my pulse and tracked it when I stood up and before and after showering, and increased my salt and water intake, in an effort to have something concrete to bring to my new doctor.

A doctor that I wouldn’t be seeing.

One new option that has popped up to allow for safer follow up visits are telehealth appointments. Not knowing exactly how long I’d be unable to seek actual care, I decided the least I could do was reach out to my doctor here, share my findings and hope for the best.

I was able to document that over the last month I’ve had one more incident of a syncope type episode, and had evidence that my pulse increased by 30 bpm upon rising, and was well over 120 bpm after a short shower.

But even with this information, a list of symptoms I believed were related (dizziness, vertigo, nausea, temperature regulation problems, heat sensitivity, GI problems, frequent urination, concentration issues, and light/sound sensitivity), and a doctor fully equipped in addressing these concerns, I’m left with an uphill battle. Although we’ve mostly been playing with the puzzle pieces of my symptoms, these one’s all fit together quite well to point to a condition called Orthostatic Hypotension.

This is defined by a drop in blood pressure upon standing and is managed and tested for much in the way as dysautonomia/POTS. The difference is that this would be defined by low blood pressure, whereas POTS is reliant mostly on a fast pulse for diagnosis – to which, based on my own records, we can confirm as a strong possibility.

My doctor offered to refer me to a cardiologist, which is the obvious next step, but due to the risks of going into a healthcare facility, we’re doing another round of self-monitoring to dig deeper. I have a blood pressure monitor coming my way, so I’ll be able to monitor BP changes. If it drops as my pulse increases, that will confirm the prognosis. At that point, I’ll most likely have no other option but to have an in person visit with a cardiologist.

This also doesn’t rule out other dysautonomia types, as multiple can be present: currently it looks like POTS and neurocardiogenic syncope both play a role.

What’s most interesting is the timeline for my latest syncope episode and the pain in my hand. It’s likely that the nerve pain is in fact Rheumatoid Arthritis – it lines up well with location of pain, swelling, and my symptom history, along with the suggestion to see a Rheumatologist. RA is an autoimmune disorder, and dysautonomia is often brought on by an underlying autoimmune condition.

When I had first looked into dysautonmia, there’s one indicator that “deconditioning” can lead to the development of it, which would create a correlation between the reduction of activity due to migraine getting worse and the development of dysautonomia. But undiagnosed RA makes much more sense.

Overall, the place we’re at now is rather frustrating. I’m successfully on the path towards having a more clear diagnosis for some of my more bothersome symptoms that have been brushed off as part of migraine. However, being on the path towards an RA diagnosis puts me in the mix of the current medicine debacle surrounding hydroxychloroquine – the anti-malaria being tested for potentially treating COVID-19. Hydroxychloroquine is commonly used to treat RA. So even if I could get a diagnosis, I may not be able to treat the pain.

RA is also an autoimmune disorder, as I mentioned earlier, and now is really not the time to be questioning if your immune system attacks itself, or consider starting a drug that actively suppresses the immune system.

Adding more conditions into the mix isn’t optimal, if anything it breaks my heart that more areas of my body simply don’t work like they’re supposed to. Managing migraine is exhausting enough, but roughly 90% of migraine patients have at least one other comorbidity, and in the year long journey I’ve had since my last hospital stay, perhaps I’m finally reaching the correct terminology to describe mine.

A.


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3 thoughts on “Seeking Diagnosis Through Remote Care

    1. *hugs* it’s difficult but I’m so thankful for the people who have been around to help me through this process. It’s been a lot easier to approach than everything migraine related, and for that I’m thankful.

      Liked by 1 person

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