The only way you can have a solid team behind you is to be honest with them - and do not be afraid to tell your doctors that you need them to be completely truthful in return. In short, open and clear communication is of the utmost importance to go through life without unexpected events that will cause you to wonder if you are being heard at all.
Sadly, many people are left with 10-minute MS appointments without even a standard cerebellar function test (a finger-to-nose and finger-to finger), or ataxia test (heel-to-toe walking) that take less than five minutes each. Sure, the number of neurologists in Ireland remains notably low, especially considering the high number of people (800,000!) with neurological illnesses compared to other countries. However, do not let this discourage you from seeking the help you need. If you feel awkward or afraid of asking, why not take a friend or family member with you, remember, strength in numbers!
A Personal Journey: Finding the Right Doctor
I changed doctors twice out of utter frustration. Being quite practical minded, I tend to take apart different scenarios of possible events and chew on likely outcomes, and if I wanted to get rid of excruciating facial pain, I had to be proactive. My then elderly GP did not seem to grasp that left side neuropathic pain in my leg had nothing to do with ‘bad ear infections,’ even after the Eye & Ear Hospital said that my ears were ‘just fine.’
When one morning on my way to work, the not yet diagnosed trigeminal euralgia and severe fatigue were still as bad as when I went on sick leave a week earlier. I got off the bus and walked to A & E near the bus stop. It was cold, it was raining, it was horrendously painful, but I just had it. Thankfully, the triage area was near empty, and I was taken into the emergency department quite quickly.
Strategically speaking, Emergency Departments cannot just send you away without at least doing some tests, and that day X-rays were taken of my face, including a CT scan of my brain, and a Doppler ultrasound test of my neck veins. Shortly after the last test, my consultant informed me that I would need to be admitted as further tests were needed the day after, like an MRI test of my brain, and others if deemed necessary.
While lying in a hard, cold hospital bed, I wondered where it all went wrong. Sure, my GP was elderly, and his office seemed stuck in time: no PC, laptop or mobile phone, no laminated posters of the human body on the walls or investigative tools like a stethoscope. I concluded that if diagnosed with a serious illness, further failings and lack of understanding would be intolerable. Considering I had been in and out of his surgery almost weekly for 5 months, each time presenting the same set of symptoms which I would later find out to be trigeminal neuralgia, optic neuritis, severe fatigue and left side neuropathic pain, the penny should have dropped far sooner.
Shortly after my diagnosis, I found a younger GP and the difference in patient care was extraordinary. Being able to present my symptoms and the diagnostic route I had walked on, resulted in more understanding; less anxiety and more confidence in my future; gaining more insight in my illness; as well as faster referrals to eye doctors and having physiotherapy closer to home. I felt like my long-term care was designed to serve me, not the doctor I was seeing. When my new GP passed away suddenly years later, it felt as if part of that safety net went missing. I lost not just a doctor who knew what he was talking about, but also a friend who went the extra mile when I needed it most.
By avoiding another misdiagnosis from my first GP and seeking help at the hospital, I learned that finding the right medical team should be your priority, not just theirs. It is your body, your illness and your right to change if you want or need to. Don’t stay in a physician-patient relationship when you feel unheard or unwanted.
References
Physician-patient relationship in neurological diseases
How to Establish a Strong Doctor-Patient Relationship
Read Willeke’s blog on Ireland, Multiple Sclerosis & Me
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