Should I See a Rheumatologist or Neurologist for My AIED (Autoimmune Inner Ear Disease)?

Good morning Dr. Nagler,

First of all I want to thank you for being on this forum and giving so many people hope.

So I had minor hearing loss in my left ear in 2015 which triggered my tinnitus. ENT said chances of another drop were slim. Well December 2019, yep you guessed it had another drop, good thing is this time I found a really good ENT. So turns out this all occurred because I have AIED. diagnosis:
“Rheumatoid factor; quantitative Active”

So my doctor recommended a rheumatologist, unfortunately the one he recommended did not take my insurance. So he recommended another one but I can’t see him until end of May. I set up the appointment but figured what the heck, maybe I can see another rheumatologist sooner. So I found one, sent her my results and she says she can’t help me I need a neurologist. So now I’m a bit frustrated and nervous.

So who should I see? I get that the tinnitus is with me for life. I got used to it once and I know I can do it again. I’m more concerned about my AIED.

Your thoughts are appreciated. Thank you.

 

Hello @Eloy Resendez Jr. Goodness, with all those "-ologists," it's enough to make your head spin. So let me try to tease it out for you.

You found an ENT (an otolaryngologist) who evaluated you and determined that you have AIED (Autoimmune Inner Ear Disease). Your Quantitative Rheumatoid Factor studies showed that you have RF (rheumatoid factor) activity, which means that your body is producing a protein that has the potential to attack your own body's healthy tissue. Your ENT suspects that that is what happened to your left ear this past December and now with the benefit of hindsight your ENT believes it may also explain the minor hearing loss four years ago.

When you say that your "dr recommended a rheumatologist," I do not know if your mean that your primary care doctor made the recommendation or your ENT doctor made the recommendation. But either way, that recommendation was made because of all the medical and surgical specialties, rheumatologists in general have the most knowledge and experience dealing with autoimmune conditions, rheumatoid arthritis being the most common. [Rheumatologists deal with all sorts of arthritis.] Now the rheumatologist who reviewed your lab suggested that your interests would be best served by seeing a neurologist, but that is incorrect. I believe it likely that she meant a neurotologist, who is an ENT with extra training specifically in disorders of the ear, including AIED.

Like I said, it's enough to make your head spin.

So first of all, while all of this is of considerable concern to you (and justifiably so), it has likely been going on for more than four years - so you do not have to put the pedal to the metal and rush out to see just anybody.

As I see it, the key to the puzzle lies with your primary care physician, who will be aware of the various resources in your geographical area. So make an appointment to see your primary care physician face-to-face, and bring your lab work with you to the appointment. Explain your quandary to your primary care physician and ask him or her to make a few calls to the rheumatologists and neurotologists in the area and to kindly get back to you with the name of somebody on your insurance plan who is knowledgeable and experienced in AIED.

At least that's what I would do if I were in your shoes.

Hope this helps -

Stephen M. Nagler, M.D.

 

Sorry to start a new thread apparently I don’t have enough clearance to simply reply. Lol.

Just wanted to thank you, I feel much better now. Yes! Too many “ologist”.

I laughed when I read your reply because the neurologist recommendation was left on my voice mail from what I can only assume was a receptionist. She obviously got her “ologist” confused as well. Your response makes more sense now.

So the sequence went: primary Dr. recommended ENT, ENT recommended rheumatologist. I was a bit impatient and tried looking for a different rheumatologist than the one recommended by my ENT. I’ve got follow ups with both, I will take your advice and ask them which is the best route.

Thank you again Dr. God Bless!

 

Glad to help.

All the best with it.

Stephen M. Nagler, M.D.