No Nearby Pulmonologist Specializing in NMD

What do you do if there is no NMD-knowledgeable pulmonologist nearby?​

Dear Andrea,
I don’t have a nearby pulmonologist who specializes in patients with Neuromuscular Disease. Will this local person understand my breathing issues once I tell them about my form of Muscular Dystrophy?

Sincerely, 
Need a Pulm

Dear Need a Pulm,
Without seeing and interacting with this pulmonologist, I cannot say if this physician will understand breathing muscle weakness in Neuromuscular Disease (NMD) or be receptive to learning about it from a patient. I personally attempted this, and the pulmonologist was unwilling to read the articles I shared, some of which were from peer reviewed medical journals that advised against what he was prescribing for me. With some physicians, the last thing they want is a patient who knows more about a medical condition than they do. I personally had to ask for a second opinion referral to another physician who specialized in the breathing issues of those with NMD. I honestly felt it meant the difference in my worsening and dying versus living and thriving.

If you choose to see for example a pulmonologist who specializes in asthma or COPD, the burden is on you to know what the appropriate interventions ARE and ARE NOT for evaluating and managing breathing muscle weakness. Pulmonologists with these specialties sometimes want to prescribe unventilated supplemental oxygen and/or CPAP, or simply corticosteroid inhalers. If for example you are experiencing underventilation (hypoventilation) and/or hypercapnia (elevated levels of carbon dioxide in the blood and lungs) at night and have struggles with a weak and/or ineffective cough, none of those interventions will help. 

In my case, I travel nearly three hours to a university based physician who works with a Neuromuscular Disease clinic. I do know some members of our Breathe with MD Support Group at https://www.facebook.com/groups/BreathewithMDSupportGroup/?ref=share have been successful in self-advocating to get the appropriate care from their local pulmonology practice. To do this successfully, it takes some education on your part, the courage to speak up for yourself and tell the physician what you have learned, and sometimes the ability to find and print materials to share with that physician. Breathe with MD, Inc. can assist you in finding relevant sources of printable information to share with a physician. Just private message us on this page, and a volunteer with our organization will assist you as quickly as possible. 

Best wishes for better breathing and stronger coughing,
Andrea