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My New Neurologist
Hey all!
As you may know, both Price and I were having issues with our neurologists.
I posted a month (or two) ago, that I would be seeing a new neurologist. By new, I mean new to me, she’s been practicing at a neuromuscular clinic for some time now.
Going into this appointment, I was very nervous. I was worried about a lot of things. I’ve heard horror stories of neurologists taking patients’ LEMS diagnosis away, writing off symptoms, and telling patients there is “nothing more” they can do for them. After the hard situation (link to the previous post)
This appointment exceeded my expectations!
At VCU, they don’t have waiting rooms for appointments, they put you straight into the room the doctor will see you in, and you also wear a tracker so they know where you are. I waited less than 5 mins to see my team.
VCU is a teaching hospital, so my team consisted of my neuromuscular neurologist, a resident, a medical student, and a nurse.
The team spent a reasonable amount of time with me, and for the first time, I didn’t feel rushed, dismissed, and/or like they were on a time crunch. I feel like I’m being rushed out the door with many of the specialists I see. They did a comprehensive neuro assessment, more thorough than the original one I had when diagnosed. I’ll talk more about that in my next post!
After they confirmed I did indeed have LEMS, we discussed what she thought should be my treatment plan.
My prior neuro told me that I had to choose either IVIG infusions or Firdapse and wouldn’t allow me to do both. My new neuro said to me that she thought both were necessary as one modulates the immune system (IVIG) and Firdapse treats the symptoms.
I was relieved that she wanted to offer me Firdapse, and we got started on that right away. So far, I can tell a huge difference but my insurance is currently asking for additional testing in order to approve. Catalyst was able to send me a bridge shipment so I could start it right away.
Next Tuesday I am heading back to Richmond to do the testing they requested. I’ll talk about that in another post in the coming weeks.
Do you have a neurologist that deserves a shout-out?
Have you ever had to switch neurologists? If so, what was your experience like?
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