A few months ago, I booked an appointment with a physician who works in the dysautonomia center at Johns Hopkins. My cardiologist had given me the diagnosis of POTS but wanted me to see an expert. I tried googling what to expect and couldn’t really find much so I’ll share my experience here!
He wanted to know everything going back to when I was 9 years old and diagnosed with type 1 diabetes. He asked about my dad’s neuropathy, my eye exams, everything he could think of regarding diabetes- not just my A1c (which seems to be all other doctors focus on).
He asked for details around my RA- leading up to diagnosis, how each biologic treated me. I could tell he was concerned about me being on Rituxan. He admitted that my rheumatologist knew much more then him in regards to treating my disease, but he thought Rituxan wasn’t the safest long term medication to be on and he’s right, it’s not, but I’ll save those worries for another day.
This was a big part of our conversation and possibly the most difficult part. If you have extreme fatigue, like me, you’re often spending your time “pushing through”. I drink a ton of caffeine, sleep whenever I can. My doctor wanted me to rate, using a battery scale, how my fatigue had changed over the years. I recalled falling asleep getting my haircut when I was diagnosed with RA and shared that my kids even plan their activities around when they know I’ll need to nap or be in bed.
This was a simple discussion- why? Because he had read my notes and actually spoken with my referring physician. What I liked the most was that he had me rank the top 5 issues (he referred to them as barriers) I was having in order of how much they are disrupting my life. I tend to gloss things over with a good old “I’m fine” but he wouldn’t allow it.
The usual- heart rate, breathing, “follow my finger with your eyes”. He then assessed my reflexes- knees, feet, elbows, hands, chin, and forehead and asked “have you always had hyperactive reflexes?”. I told him I startle easy but it seemed like a silly thing to notice.
I warned him about my crappy knee- he asked if I had trouble moving it and I told him my knee would make some nasty sounds but could even hyperextend so I was fine with movement. Another look and a question- “have you always been hyper-mobile?”. He then had me bend my thumb back to touch my inner arm (I thought every one could do that?!).
My doctor did a great job of explaining POTS- exactly what it is, how many people have it, how much is still unknown. He also explained why he didn’t think I have diabetic neuropathy but that he is concerned that Rituxan may be damaging my nerves itself or by causing an autoimmune response.
A few more tests– importantly an EMG followed by a skin biopsy. Also a tilt table test– my doctors had initially tried not to have me go through this testing because my vomiting was so violent but it is important for insurance and getting authorization for additional testing and treatment.
I am to drink a minimum of a gallon of water a day (can use Powerade Zero towards the total but caffeine doesn’t count). I smartly told him I already drink almost 100oz a day and then my math caught up with me. It’s more than that…
Two pickles a day! He said forget the thermotabs- pickles are inexpensive (in comparison) and a good lifelong treatment. #PickleLife
IV Fluids– He would really like me to start twice weekly IV fluids. In theory, this is great- I know after my bag of fluids with Rituxan, my dizziness and heart rate issues are nonexistent for a day or two. The problem is figuring out how I can possibly get infusions twice a week while I work full time and care for my family (and myself).
I’ll get my tests scheduled, buy more pickles, log my water, and keep taking my meds. Once my results come back, my doctor will do a few things- order more tests if needed (but he said he’d rather not) and speak with my rheumatologist in regards to treatment options.
He’s concerned that my high level of fatigue is more POTS related than RA. He may be right as no biologic has ever lowered my level of fatigue. I’d hate to think that I’ve been unnecessarily pumping harsh drugs into my body when I could have maybe had them less frequently or at a lower dose.
He made sure to stress that POTS is a real syndrome. He said people struggle to get a doctor to take them seriously and often end up seeing “professionals” who aren’t doctors and don’t actually help patients in the long run.
If you’ve seen a dysautonomia specialist, was your experience similar to mine? Anything I missed?