Engaging in Open Dialogue With Doctors Helps Us Make Informed Decisions

Most people in the rare disease community can relate to the constant march to various doctors in our quest to manage our health, or that of a loved one.

Our doctors are invaluable. If we are really blessed, they walk compassionately beside us on the path to diagnosis and treatment. But sometimes I find my anxiety building as we draw closer to my daughter’s next neurology appointment. 

There are numerous reasons for my anxiety. First, the day we received her Lambert-Eaton myasthenic syndrome diagnosis is still fresh in my memory. We were told to take Grace home, get a wheelchair, and check back in six months. No medicine, no treatment, no hope.

Second, I desperately want to get positive feedback from the doctor. I want him to recognize the progress Grace has made and the positive results from her treatment.

Last, I want him to offer new ideas for improving Grace’s quality of life, and I’m always anxious that he will say there is nothing more he can do. So, I prepare well for our six-month appointments and hold my breath.

During our most recent visit, I arrived with my notebook full of questions and hoped for the best. The doctor started by examining Grace, asking her to walk, and noting her improved balance and speed. He was pleased with those results. Then, he tested her reflexes, which showed mixed improvement. Grace feels very comfortable with him, and he is very personable with her. He always offers easily understandable explanations.

Following are a few topics we discussed.

COVID-19 vaccine

Grace recently turned 16, so she is eligible to receive the Pfizer-BioNTech COVID-19 vaccine. I had some reservations about her getting it. She is on the immunosuppressant Rituxan (rituximab), so I was unsure if she would be able to produce the antibodies. I was also apprehensive because the onset of her disease occurred immediately after receiving another vaccine. Grace’s doctor patiently walked me through the decision-making process. 

Weight loss

Grace has struggled to keep weight on ever since she began exhibiting symptoms. She had gained back most of the 13 pounds she lost, but when she discontinued prednisone, she began to lose weight again. Her doctor talked about starting her on an appetite stimulant, but in the meantime, he referred us to a dietitian. 

IVIG vs. subcutaneous treatment

Grace receives intravenous immunoglobulin (IVIG) therapy every four to six weeks, but it has become increasingly harder to find a vein in order to run the IV. A fellow LEMS patient turned friend wrote about her positive results with subcutaneous immunoglobulin for Lambert-Eaton News. I wanted to know if this might be an option down the road for Grace.

Her doctor confirmed that it could be a good solution to the IV problem. I tucked that bit of information aside for a future date. Now I know it’s an option should we need it. 

Extended-release Mestinon

Grace takes 60 mg of Mestinon (pyridostigmine) three times a day, but she was never prescribed the extended-release version for overnight coverage. I believe her doctor’s goal is to keep her on the lowest dose of medicine possible, which I appreciate, so we had never really discussed this option in depth.

Lately, I’ve noticed how hard it is for Grace to get moving in the morning, and thought it might be time to add the extended-release Mestinon to her routine. Her doctor wholeheartedly agreed, and we are seeing some fantastic results from it. This change will translate into more independence as she gets older. 

Despite the anxiety I feel, I am grateful for the time we have with Grace’s doctors. When I go well prepared, our time is productive and beneficial to Grace. The doctor is partnering with us for her betterment, and I can relax knowing he has her best interests at heart. 

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Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.