-
Working backwards from some of the difficulties you have been struggling with, a sleep study is critical for your care. During REM phase of sleep, the auxiliary muscles involved in breathing become paralyzed, and the diaphragm does the work (we call it belly breathing as you can see in infants, with underdeveloped auxiliary chest muscle) — however, in MG, many of us have a stiff, less mobile diaphragm and so we can suffer oxygen deprivation during those phases of sleep (this was finally explained to me by a brilliant sleep specialist/pulmonary doctor). I use a bi-pap at night (it was a struggle to get the machine, since medicare only seems to understand COPD and frames its requirements for lung damage, not inadequate muscle engagement). Rapid heart beat “tachycardia” is often a symptom of this disease, and my cardiologist and I are thrilled that regular use of the machine has lessened these events, since, because he is MG literate, he does not want to prescribe medications that cause other MG problems. The machine has been useful for those spells during the day, when my breathing is shallow, as well, particularly during heatwaves in the summer. Having shallow breathing, swallow difficulty and extreme weakness are all serious indicators of exacerbation of the disease, and it is difficult to convince doctors of this unless they, as they are trained for other diseases to do, observe it. You need an experienced neurologist, and a neurologist who is experienced diagnosing and treating MG that is what they call, to my dismay, “sero-negative” — which isn’t the entire picture, since they fail to do every test for specific antibodies that may occur at different points in the cascade of firing a nerve at a muscular juncture. I went through several doctors, including one who claimed I didn’t have the disease, after an SFMG negative result, and he somehow never got around to arranging the test that he said he would do to confirm whatever phantasy he had at the tine (this is called patient abandonment) — on the staff of a major NYC hospital. Other “sero-negative” patients had the same horrid experience. You need to get to a support group, MGFA has lists of national support groups, and meet other patients, such as yourself, who have been able to find neurologists who have CLINICAL SKILLS, not just test skills. MGFA also has lists of doctors, but finding other patients in your area to get the inside information on them is most helpful. Don’t waste your life on poor communication, and don’t feel badly about changing doctors — I usually simply say to the new doctor that I am grateful for the care I have gotten, but it wasn’t a good fit. It may take 4 months to see a neurologist, but they should be available to you given your volatile situation when necessary. I have had this disease in full force since 2007, and only got appropriate treatment late 2019-20. Keep going until you have what you need, the relationship you need to support your health and reach out to support groups. It is critical that you become more knowledgeable than any doctor about your disease — it is, sadly, our job to educate them, even neurologists. Wishing you the best outcomes, and urging you to continue reaching out.