How I Built My Healthcare Team
How do you build a healthcare team? One professional at a time.
Bouncing around between many healthcare providers
During the earliest phase of my disease journey, the first two health professionals were the hardest to pin down: a primary care doc and a neurologist. While in the midst of my very first attack—I hadn’t a clue what might be causing my limb weakness and numbness—I bounced from seeing:
- A young female primary care doc who told me that women are hysterical, misbegotten creatures and therefore lack credibility, before telling me I was having a panic attack (I wasn’t)
- A neurologist who acknowledged the brisk reflexes on one side but dismissed it as stress
- An ER nurse who also told me I was having a panic attack (again, I wasn’t)
- An allergist who prescribed prednisone, then ruled out asthma as the cause of my breathing problem
- A pulmonologist who also ruled out asthma, accurately assessed that my breathing problem was caused by an upper respiratory infection I knew I was suffering from at the same time, and told me to see a neurologist when I mentioned limb numbness
- Finally, a second neurologist, who thankfully took me seriously and put me in the hospital for five days of testing and IV steroid treatments
Sent home to process everything myself
I was sent home with a cervical myelopathy-of-unknown-origin diagnosis, with a suspicion of multiple sclerosis. The viral respiratory infection had rendered the lumbar puncture result inconclusive. No follow-up was recommended. I was to contact them only if I had a relapse of the same symptoms. I was left to cope with the aftermath by myself, to find a way to process what had just happened. I would see no medical professionals again for the next five years. But after I received the MS diagnosis, I started building my team.
Most of us will need to add an ophthalmologist to the team, and many will engage one as the first professional they visit. Optic neuritis is often the earliest presenting symptom that alerts the doctor to send us to a neurologist for MS diagnostic testing. We have a 50 percent chance of being diagnosed with MS after an initial bout of optic neuritis. Sixteen years after developing MS, I saw an ophthalmologist for an eyeglass exam. He discovered a demyelinating lesion in one eye. I’m fortunate that there is only a scar and no vision loss.
A physiatrist treats brain and spinal cord conditions and practices in the field of Physical Medicine and Rehabilitation (PM&R). We often cross paths with them when our mobility, spasticity and pain issues become further compromised by disease progression. A physiatrist can treat your muscle spasticity by giving you Botox injections, an intrathecal baclofen pump trial and implant, and/or an order for physical therapy. They will conduct an EMG that tests for peripheral neuropathy, give you spine injections for pain, and do a fluoroscopy-guided lumbar puncture in radiology if you have back problems that might make a traditional spinal tap undesirable. I saw two different physiatrists in different parts of my journey. One conducted an EMG a few years after the MS diagnosis, and the other evaluated me for an intrathecal baclofen pump to treat spasticity rather than continue taking the oral version.
A gastroenterologist is the go-to doc when digestive problems arise. Multiple sclerosis is notorious for causing motility dysfunction in any segment of the digestive tract. I’ve been under the care of a gastroenterologist since April 2016 and have done numerous tests to rule out myriad causes of bloat, distension, pelvic pain, and constipation. The latest test was a vaginal ultrasound to rule out ovarian cancer. Though the ovaries are normal, uterine fibroids were detected, which can also cause those symptoms.
Gynecologist and urologist
I must now have a talk with my gynecologist about possible treatments-and my urologist to review my recently recurring sensitivity, pain, and the symptom overlap with other causes, as well as the need to self-cath a retentive bladder.
A urologist specializes in treating genitourinary issues such as a neurogenic or spastic bladder. If you experience difficulty urinating or feel frequency and urgency to urinate, a urologist can determine the cause and offer effective treatments such as medication and self-catheterization.
A speech pathologist
A speech pathologist can help you learn exercises that strengthen the muscles used for speech and swallowing. I had a consultation with one but haven’t yet gone through the therapy. The pathologist instructed me to talk about myself. At the end of the soliloquy, she told me that I have a lateral lisp. I’ve always heard it in my speech but friends and family denied noticing anything.
Mental health professionals
This is an incomplete list of specialists you might need to visit during your MS journey. Mental health support, for example, is a field with which many MS patients develop an intimate familiarity. I kept brief my two experiences seeing psychologists. Neither of them had any experience working with neuro-disabled people, and I found them at times to be insensitive and short with me if I had a memory lapse during a Q & A session. However, many people with MS have found therapists that are compatible, aware, and helpful.
Finally, your primary care doc or neurologist will refer you to the appropriate specialist when the need arises.
For more articles about who might be on your health care team, type “healthcare team” into the MultipleSclerosis.net search box.1-3
How many specialists did you see before finding "The One"?