Tags
autoimmune disease, changing doctors, choosing a doctor, daily life, expectations, ms, MS Specialist, multiple sclerosis, neurologist, spoonie, support
Prednisone induced insomnia gives a girl a lot of time to think. As I’ve been working through my feelings about my recent experience cheating on my neurologist, I’ve been trying to get myself to a decision about where to go from here.
I prefer to approach problems analytically, so I started trying to break it down in terms of numbers. Who has been in practice longer? Who has been specifically focused on MS longer? How often do they publish? How often do they appear to speak? Do they hold positions outside of their practice? Do they seem to be held in high regard by the community? Had other patients reviewed them online? Basically I googled myself silly. Two tabs, one for each doc, and I went to town. After a bit I realized just how crazy this was (did I mention that I’ve not been sleeping?). I can’t quantify my doctor choice based on their Google results.
Instead, I think it comes down to this: the practice I was going to is busy. Maybe too busy. They have a huge patient panel and not enough docs & nurses to handle everyone. Of course, to complicate matters, I just received word through a local support group that the practice has added a new MS Specialist. Like in the last two weeks. I’m not sure if that fact would change things for established patients or if the practice would simply take on more new patients then before. They are a large practice affiliated with a local teaching hospital, so I don’t think there is any shortage of folks trying to get in the door.
Although I loved the MS Specialist I was seeing and the staff in her office and although I was immensely grateful for everything they did for me leading up to and right after diagnosis, my needs have changed over the last year. Rather than being completely focused on the panic of the new chronic illness and how we treat for the long term, I now need help with managing the day to day-ness of the disease. I need symptom management. I need support. And periodically, I just need someone to tell me that what I’m experiencing is a concern and why. I don’t want to feel brushed off. Or that time is only available for patients with more serious issues. I want those patients to take priority, of course, but I would hope that at some point someone could also get around to addressing what is going on with me.
W is going to attend the next appointment with the new MS Specialist at the end of the month and unless he has any resounding concerns, I think the decision has already been made.
One major decision down, fourteen thousand little ones to go. Life should get a bit easier now right?
Being brushed off is a major problem. It is extremely frustrating and I’m so sorry it’s been happening to you as well.
Thank you for sharing your experiences with MS. I enjoyed reading your post.