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Getting a “Divorce” From Your Neurologist
Our relationships with our neurologists are one of the most important in our healthcare team. Lambert-Eaton has such a huge impact on our lifestyle, mental outlook, and everyday activities. What do you do if that relationship isn’t working out or has failed?
This is where I find myself now. My diagnosing neurologist and I aren’t doing well in our patient/doctor working relationship. It’s become fractured.
I won’t go on at great length, but make a couple of observations. First, my neurologist hasn’t listened to me when I report my LEMS hip weakness since our last visit. The physician always says I look GREAT! Of course, I do, I’m just three days out of my IVIG. I’m supposed to look and feel great. That doesn’t cover the rest of the eight months since I saw her last. When you’re feeling good, LEMS can be ‘invisible’, even to your doctor. Because I’ve looked so GREAT the last two visits, the doctor wants to start cutting back my medication schedule at the next visit in six months. What the …..!!!! For me, this is a giant red flag. I’m terrified.
A second problem is that my physician believes they know it all and is rigid in their thinking. There’s no room to listen to my experiences of hip weakness when evaluating me for 15 minutes. I have transient weakness in my left shoulder which is LEMS. I was told by this doctor that it absolutely could NOT be LEMS because it wasn’t bilateral. I got frustrated and polled a LEMS group. I got plenty of responses of one-sided weakness being experienced. Again, this is rigid thinking with no room to learn from the patient.
The inability to listen and rigidity of thinking is a dealbreaker for me now. It’s gone on too long. I’m in the process of working to find a new neurologist. We all deserve to have a neurologist we are comfortable with and can work with in confidence. When I hear others talk about these types of issues, my advice is always, to be your own best patient advocate. Today I’m being my own best patient advocate for myself.
If you’ve had issues with your neurologist, what were they and how did you solve them? Did you stick with that physician, or go find another? Please let us know in the comments! (No names please)
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