SMA Specialist Discussion Board: What Do You Look For?
Feel free to share your experience with SMA specialists, and what you look for when searching for the right doctor.
I was looking for a knowledgeable, compassionate, non-alarmist pediatric neurologist. This physician was affiliated with a teaching hospital and was up on the latest information that was available from all resources, nationally and internationally.. Marc M., Moderator, SpinalMuscularAtrophy.Net
When looking for specialists my first tip is asking people (with sma or other neuromuscular diseases) for recommendations in the area. If that’s a dead end I call the closest MDA office
Yes I think it does help if you get recommendations from someone else too. I have had a lot of different Doctors for different things like Pulmonologist and Respiratory Therapist for my Breathing Function and things like that. And I get Referred to other Doctors when something happened like my Lung Infections and things like that too. But if you know somebody else who went to that Specialist first it would help a lot for me to know where to go.
That's a great call-out! Having someone tell you their first hand experience with a specialist definitely helps build that trust in a healthcare professional. Thank you for sharing with us. Best, Abby (Team Member).
I usually interview the neurologist that was referred to me. You’d be surprised how many have never heard of SMA or the treatments available.
that’s a great way to get to know any doctor, especially someone taking care of your SMA! I always try to research whoever I am placed with and ask them alot of questions about their experience and if they’ve ever worked with neromuscular patients before. You’re very correct when you say not a lot of doctors have even heard of SMA, which is scary when you’re living with it. Self advocacy is so important and it sounds like you’re doing well in that for yourself. -Jennifer Moderator
