This Is What Good Care Should Feel Like

Adding a new neurologist to the care team works out better than expected

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by Shawna Barnes |

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On Aug. 8, I had an appointment with a new neurologist. I was apprehensive about it because he would be the second neurologist I’d see at Veterans Affairs (VA) since our move to Wisconsin. I was quite happy with the neurologist I’d met when we got here, when I was establishing my new care team.

While I’ve had great success with most of my VA treatment in recent years, the VA did what the VA does. My first neurologist appointment was with a resident who wasn’t going to be there long term. That little tidbit of information hadn’t been disclosed. As a result, I was a little apprehensive about my upcoming appointment.

Why was I apprehensive?

As someone with seronegative myasthenia gravis (SNMG), I’ve had to fight to be heard and get care. It took me nearly eight years of being a squeaky wheel to get a diagnosis and begin treatment. There is no globally accepted treatment protocol for SNMG. Anxiety and apprehension ensue when you have a rare disease and have to change providers — especially when its treatment is off label and doesn’t have a global standard of care.

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I arrived early for my appointment, with my husband pushing me in my wheelchair. The doctor ran late with another patient. These two things combined led to my husband and I sitting in the waiting room for over an hour — an hour for my brain to run through all the possible outcomes of the appointment.

When it was my turn to be seen, I was immediately put at ease. My new neurologist was conversational, interested in my answers to the questions he asked, and genuinely concerned with my well-being. I asked point-blank questions, such as if he was going to be my neurologist going forward because I wanted continuity of care. He wasn’t offended by the question and was quite reassuring.

We discussed my plans for calorie cycling to work with the increase in appetite and cravings that prednisone causes, as well as my plan to increase physical activity. He approved of both and asked for progress updates.

He asked me what symptoms I experienced and how those symptoms responded to the current treatment plan. He asked how I was feeling in general. He listened to my concerns about prednisone and the increase in pain I was experiencing. We created a plan to begin weaning me off the prednisone.

He explained what he was hoping to see, but said that if any of my bulbar or breathing symptoms begin to flare or become exacerbated, we’d have to bump the prednisone back up and begin to taper off it even more slowly. He encouraged me to use the secure messaging system if I had any questions. He wanted to know how I’m doing with the taper and if anything worsens.

He wants to keep a close eye on me and see if we can get the SNMG managed even better. He wants my general quality of life to improve. I’ll see him every three months for the foreseeable future.

I felt heard. I felt validated. I felt safe and in good hands.

Once again, I’m thankful for an amazing care team. This is what medical care should be.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

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