Special Delivery: Navigating the Maze of Specialists
Like many in this community, my husband’s path to diagnosis and treatment was far from direct. His symptoms began while we were wintering in a southern state.
He discussed that unique double vision (that resolves by closing one eye) with the eye doctor, who did 1 blood test and dismissed the idea of myasthenia gravis (MG).
Not familiar with MG
Back home our primary care physician did 2 more blood tests and said "no way." These were very good doctors, but a brief review of myasthenia gravis in medical school just didn’t prepare them for my husband’s "triple-negative late-onset" version of a condition that is rare to begin with.
The symptoms persisted. So did we. A bad bout of bronchitis led to aspiration pneumonia. Swallowing was a big problem and got worse when the wrong antibiotics were administered.
Still, the generalists in the hospital and nearby offices didn’t recognize the problem. They blamed it on the side effects of radiation therapy a decade earlier even though the symptoms had come on rapidly and were pretty much concurrent with the antibiotic administration.
Referred to another neurologist
After a long wait for an appointment, we finally found a neurologist who listened carefully. But her answer wasn’t what we expected: "I want to refer you to another neurologist."
We were totally set back and felt like we were in a maze. Not another specialist! At that time, we didn’t realize that there are at least 8 subspecialties in neurology. What we needed was an expert in neuromuscular diseases.1
A few days later my husband was getting an antibiotic infusion for chronic sinus and bronchitis. We had a casual chat with the infectious disease doctor.
Why was it so hard to find the right help? He had a wry sense of humor: "When you have a nasal infection you have to decide. Some ear, nose, and throat (ENT) doctors specialize in left nostrils ... and some do right nostrils."
By this point, his attempt at dark humor seemed like great wisdom. Navigating the maze of specialties for all my husband’s symptoms seemed to border on the ridiculous.
Our list of doctors
That was 4 years ago. We were actually lucky. The second neurologist had just the right experience, training, and perspective. Our primary believed in teams and accepted the neuro’s diagnosis, even without the traditional blood results.
Before each visit, he would carefully read others’ notes. We also had an insurance company that didn’t require formal referrals for every specialist. So soon our network expanded to:
- That senior neurologist who specialized in neuromuscular disease
- A larynx specialist (a rarity among ENTs) for dysphagia
- A (doctorate level) speech therapist to monitor swallowing
- A pulmonologist, who treats aspiration issues
- Respiratory therapists, who taught breathing therapies
- A physical therapist with specific expertise and training in MG
- A general surgeon, who installed and maintains his feeding tube
- Another ENT, who monitors hearing and chronic ear infections
- An orthopedic doctor, who treated pelvic fractures and monitors for osteoporosis
Communication between physicians
There are also specialists we’ve never met—like the folks at Mayo Clinic who did the blood work ruling out paraneoplastic syndrome, and genetic analysts/counselors. With a much deeper understanding, we now navigate that maze of medical expertise with confidence.
We are also lucky to be near a metro area and to belong to a medical system with complete communication among these professionals through a user-friendly computer network.
We can read all of their notes, and our primary follows them carefully. Now we only need to see most of those specialists once a year. In between our primary physician keeps my husband "in line."
Challenges with appointments
But that’s obviously not true everywhere. People wait months for appointments with specialists, only to discover they may not have the right one.
When we were wintering in the south I’d have to hand copy reports and carry them from office to office. Sometimes they were taken seriously; sometimes not so much.
Since so many people are relying on social media for medical information, some doctors have an attitude toward anything that a patient or advocate brings from home. And some systems simply don’t rely on networking. When someone is simultaneously coping with an exhausting condition, that can be a bridge too far.
How do you make the best use of today’s specialty-based medical system? Step 1 is to have a great relationship with a primary physician who is also a good team manager. MG isn’t for amateurs. (I know that may sound snarky, but it’s true.)
Your primary can create the map through which you navigate the maze. When we travel to warmer areas in the winter we have another friendly primary who can "grease the skids" if need be.
Then make sure you maintain a patient relationship with each specialist. In most cases, one visit a year is all you need. Physician assistants or others can keep you current in between appointments without much delay.
But if you lose the status of "active patient" the wait might begin all over again. So we take the time to do that one annual appointment.
Keep your notes
And third, we do keep those notes. While the doctors at home "talk" to each other, we never know when something new will come up.
Today we feel far more confident in our professional resources and in our ability to navigate the specialty maze. We know who to call and have reasonable expectations of constant contact.
Did you know what myasthenia gravis was prior to your diagnosis?