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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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6 Replies
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This is amazing news Ashley! So glad it’s been good so far! I did switch from my initial neuro after they denied my first IVIG, he admitted I was his first LEMS patient, he refused to try Firdapse, and he didn’t know anything more about LEMS than he did the first visit he diagnosed me. My new Neuro is incredible! She has a few LEMS patients and has been spot on with treatment from the beginning. Granted, we had to increase a day of IVIG after a few months because I didn’t experience any improvement but she made the change quickly. And now I’m better and stronger than ever. She listens to everything I say and documents it all with her interventions on her note. She’s kind and very intelligent. I alternate with in person and telehealth visits so I don’t always have to travel.
I’m so excited about you feeling awesome! Please keep us posted -
Ashley,
This is great news. I’m glad the switch was a good one. I may make the same move after my late September appointment.
David
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Hey @deztali1980
I’m so glad you were able to find someone more used to LEMS patients! It really makes a huge difference to have someone knowledgeable on your team! When you say you had to add a day of IVIG, did she further split your dosage up or increase your dose? Keep us posted on your progress!
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She actually doubled my dose. So I get 35 grams per day for 2 days. A total of 70grams total every 3 weeks. It’s been working very well. Occasionally, I begin to feel symptoms a few days right before my IVIG but for the most part I do quite well. Plus my Firdapse of course which brings instant help.
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Hey @dpmitnick
Thank you! I highly recommend switching, especially if you are only being treated with IVIG like I was. Firdapse made a big difference for me!
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Ashley,
I participated in the trials of firdapse but had to quit because when I had IVIG with the trial meds I retained huge amounts of fluid and ended in the ER. Is Firdspse different than the dap3 that was used in trials in 2017 in this area?
David
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Hey @dpmitnick
I’m sorry to hear that. IVIG does cause you to retain fluids, so it was probably that. I know I gain about 5lbs from fluid the first few days after my IVIG. I have not heard of Firdapse causing that before.
Fidapse and 3/4 DAP are pretty much the same, except Firdapse contains phosphate salt which allows it to be stabilized and does not have to be kept in the refrigerator.
Hope this helps you!
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