I’m going to look at the site @runnergirl. I too think we must speak up. I am less frustrated though about this whole thing since I’ve joined this Mayo forum. I no longer blame my personal neurologist for the diagnostic, research, and cure-finding that the whole discipline of Neurology has chosen not to further. I do, however, find him not capable of communicating, not helping to understand the situation, not making non-drug related suggestions to help sustain or improve quality of life as bad as it’s become, and just not showing compassion at least for what we’re going through and how we’re trying to stay positive and want guidance on how to make the best of it (not depression pills). For that, I have asked my PCP for a new neurologist referral. She previously kept talking me out of it because she’s not sure the grass will be greener, but I need my medical team to make me feel positive.
Last week I asked my Neuro for a Podiatrist referral to help fit me with orthotics or shoes to help me walk better and more properly, as to help reduce the leg, back, and hip pain I get from not doing so. In the exam, with a trainee in the room, he pointed to HER and told her to look at how I’m developing hammer toes. Would you believe I left my 6 month visit with him without a Podiatrist referral?? My PCP made the referral for me when I saw her for my physical yesterday, and I already have a Podiatrist appointment for next week!! I so want to get my gait improved and am rejoicing at this opportunity!
Now the sad part. My PCP and I agreed it would be ideal to keep a Neurologist in our same medical system, as I have about 7 other doctors and lab centers in the system and it would be convenient to have all records in the same system to share. Apparently it takes a Supreme Court trial and a lot of paperwork to justify why I want to change to a different Neurologist in the same system, especially one 15 miles further away from me….. So, if my reasons for needing better teamwork, not feeling we understand each other, and feeling I need better organizational and communication from my Neurologist aren’t good enough, I may not be granted a new Neurologist. I would then have to transfer my Neurological care to a different healthcare system, which would certainly be ok, but I would be terribly disappointed with this major major healthcare system I use. It’s not like I’m leaving my hairdresser for the one who has the chair directly beside him/her - we did pick one in a different office. But, oh well…