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Vocal Cord dysfunction?

Ear, Nose & Throat (ENT) | Last Active: Sep 27 10:13am | Replies (56)

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Profile picture for adkindt @adkindt

I was misdiagnosed by multiple doctors where I live. Been going to Mayo in Jacksonville for chronic cough. Finally the correct diagnosis is Inducible Larngeal Obstruction, a form of vocal cord dysfunction. Starting intensive speech therapy next week. I love Mayo.

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Replies to "I was misdiagnosed by multiple doctors where I live. Been going to Mayo in Jacksonville for..."

@adkindt Gotta love great doctors!
My new pulmonologist diagnosed the same thing (already knew about the Asthma & Bronchiectasis and have them under control) when I reported random incidents of choking on air, water, ice and food for no apparent reason. Speech therapy got mine controlled, and helped me understand when my cough is VCD and when it is in my lungs. I had to wait for years until my pulmonologist in the same practice retired to get on her patient roster.
Do those home exercises - when you backslide, it is immediately obvious...

Hi, @adkindt - sorry to hear about the misdiagnosis and generally long road to your diagnosis. I'm so glad you got a diagnosis that seems correct.

I experienced a pretty long road to my final diagnosis with asthma as an adult. The journey included a pit stop where one doctor thought I had GERD and treated me for that till we realized GERD meds really were not making a difference for me. I had chronic cough, too, which turns out to be my main asthma symptom.

I'm tagging a few other members on Connect who have talked about misdiagnosis with asthma or some other relevant diagnosis, and thus may have something to share about their experiences, such as @toby77 @ssgaurav2000 @payette78 @blm1007blm1007 @californiazebra @mth13.

adkindt - what made your doctor in Jacksonville, FL, decide against asthma and ultimately decide you had inducible larngeal obstruction?

I think there are many obscure disorders, not seen in entire practice histories, so doctors work with the symptoms and patient histories and try to treat what they know. In my case EGPA is diagnosed in only a few people per million per year, and many doctors only saw the condition mentioned in medical school. It is a progressive disease which starts with sinus issues and then asthma-like issues, then intestinal issues and finally vascular and kidneys, so you wind up visiting multiple doctors who never speak to each other to connect the dots. Medicine seems to operate in silos instead of as group diagnosis. Doctors do their best, under pressure to meet insurance and Medicare requirements and multiple patients per day. You can see why we odd ones slip between the cracks.
So glad you finally found the true cause of your issues. I can certainly commiserate and am also glad you have found this site for finding good factual information and friends to help you feel less alone in your journey.
God bless us all,
MTH13

I googled: inducible laryngeal obstruction (ilo) and SOME of what it said:
Causes
ILO can be triggered by exercise, stress, or fumes, or it can occur without a known cause
It can be associated with lung disease

Misdiagnosis:
ILO breathing can be noisy and is often misdiagnosed as asthma
Symptoms of ILO can overlap with asthma and chronic obstructive pulmonary disease (COPD}

With reading all on Mayo I am learning there are so, so many things that can/do happen to us and this vessel called a body.
Barbara