This One Mistake Could be Stalling Your Chronic Illness Journey

Quick storytime, friends. A real experience from one of my appointments.

Neurology PA: I don’t understand why you are here.

Me: I have been having progressing episodes of leg weakness for over a year. My neuromuscular neurologist did an EMG, but it was normal, so he no longer wanted to explore things with me. I came to you for help.

Neurology PA: We are neuroimmunology. We don’t treat Sjogren’s (which she pronounced wrong — very telling).

Me: I saw you initially for suspicion of Multiple Sclerosis. Is that the only condition you diagnosis and treat?

I never received an answer to that last question. Regardless, it illustrates one of the most common mistakes patients make when trying to figure out their chronic and complex symptoms: seeing the wrong specialists.

Before you think that is too basic and run to TikTok for some entertainment, allow me to clarify. I don’t mean you saw a neurologist when you needed a rheumatologist. I mean, you saw a rheumatologist who has focused their career on sarcoidosis, but you are suspected to have Sjogren’s Disease (SjD). Yes, all rheumatologists are trained in both and many other rheumatological conditions, but I use “trained” loosely. A few hours of education in med school and a sprinkling of SjD patients throughout their fellowship is not likely to benefit you if you suspect SjD.

Here’s what happens…

You suspect Sjogren’s, so you find a local rheumatologist with decent reviews and see that Sjogren’s is listed under their specialty area. Score! You make the appointment, wait months to see said rheumatologist, and then find out at the appointment that they are woefully misinformed*. This is another wasted appointment that leaves you frustrated and discouraged.

• Side note: This does require that you be educated in the latest research on your suspected condition. Not sure how or what to research? A patient advocate can help with this (shameless plug).

What went wrong?

That rheum has dedicated their focus area and research on Rheumatoid Arthritis. All they could offer was basic Sjogren’s information that was outdated. Physicians are insanely overworked. They have zero hours to stay on top of the latest research and treatment for every disease under their specialty. That would be a full-time job itself.

4 Tips to Help Get into the Right Specialist

1. Understand that a condition listed on the clinic website or physician’s bio does not mean that it is truly their specialty area.
2. Get recommendations from diagnosed patients. For me, I joined Smart Patients and two Facebook Support Groups for the condition I suspected (Sjogren’s) and created this post: Please help. I’ve been sick with classic Sjogren’s symptoms for years and getting nowhere with rheumatologists who are clearly not up to date on current research and diagnostics. I live in North Carolina. Can you please recommend a physician who can diagnose Seronegative Sjogren’s (ex, understand the importance of a lip biopsy)? I am willing to travel to neighboring states.
3. Take those suggestions and go to HealthGrades.com. It is great that one or two people suggest a doctor, but dig a little deeper into reviews from a third-party site—NOT the hospital or clinic where they are employed. Once you enter the doctor’s name into HealthGrades, you are looking for the overall rating and written reviews that hopefully mention the condition you suspect (E.g., Dr. Smith was amazing for treating my Lupus!).
4. Request that referrals sent to physicians are for “the evaluation of [insert suspected condition].” That has saved me twice. I was denied as a patient at a neurology and rheumatology office for the evaluation of Sjogren’s. While it absolutely sucks to be denied as a patient (hello, middle school flashbacks of sitting alone at the lunch table), it is better than waiting months, then finding out as you sit there that they don’t diagnose or treat your condition.

Extra Credit Bonus Tip: If you like to put on a detective hat, you can use YouTube, NIH, and PubMed to search for specialists talking about or researching your suspected condition. For example, I found an amazing neurologist, Dr. Brent Goodman, talking about neuro-Sjogren’s and Dysautonomia on YouTube. He was a repeat speaker at Dysautonomia International’s annual conferences. I took to Google and found out he sees patients at the Arizona Mayo location. Unfortunately, they didn’t take my insurance.

Whether it is an autoimmune disease, connective tissue disorder, rare disorder or anything in between, getting the right assessment and help can be a long, exhausting process. Give these tips a try to hopefully reduce the chance that the specialist isn’t quite right for you. I sincerely hope it helps!

If you enjoyed these tips and want even more strategies to boost your confidence, check out my Patient Empowerment Workbook here. It’s 39-pages of checklists, tips, scripts, and more to power-up your appointments!