Relapsing Polychondritis

When my symptoms started, I had already had RP (for 20 plus years and I hope someone knows what RP is) the red ears, painful nose, swollen eyes, my eyeballs feeling like they were going to pop out of my head, neck pain started in Jan 2019. Finally I was diagnosed with Relasping Polychondritis in September 2019. At the same time as my ears started turning red, (the outter temperature of my ears would get as hot as 106 degrees. I used an infrared temp gun. My ears were so painful. But at the same time as these symptoms started I also had what I described as going out. I thought I was going to sleep, while eating, but it has been happening since Jan 2019. The same time as the red ears, nose pain, eye pain etc.. Now the incidents are almost daily, my Pulmonologist gave me methocoline breathing test. I failed it. My Rheumatologist explained I was not expelling all of the air that I breathed in. When my Pulmonologist showed me the results of my breathing test. I had several before this with all numbers coming back right. Except once. But I was coughing at night and chocking, so she ordered a methocoline test, I asked her if that could be causing these things where I go out. Most times you can't wake me up. I really thought I was falling asleep. But she called it syncope and that it might be something to do with my vagus nerve, because it happened when I ate. So she said maybe chewing was causing something to pinch the nerve. And it was effecting my heart. So she put a heart monitor on me that day, I wore it for 7 days. I had 18 episodes of my heart beating about 200 beats a minute. But it only lasted at the most 15 seconds. I never even knew I had this problem. I never felt my heart beating fast. And I have lost 70 pounds, without trying in the last year. My Rheumatologist called it SVTC. He is really smart. He diagnosed my RP on my first visit. They sent me to a cardiologist who seemed concerned. He explained I was going unconscious. So the cardiologist ordered a tilt test and a complete two-dimensional transthoraic echocardiogram. But I did not fail the tilt test. But I never passed out standing up. Only in the chair. My two dimensional transthoraic echocardiogram stated Right side was good, but left side, left atrium is moderately dilated, mild mitral regurgitation, Mild tricuspid regurgitation and the LV Diastolic Dysfunction with decreased EF is indeterminate. Left ventricular systolic function is low normal. But since the Ejection Fraction was 50-55%, the PA said I should see a neurologist which I have already done this and all kinds of test. His conclusion was I was in autommune storm. That neurologist didn't have any answers. I also have RA, Sojgrens, Lymphocytic Thyroiditis, Hypothyroidism.
I want to know is it ok to go unconscious when you eat. Lasting more than 15 minutes, up 2 hours or longer. If my heart is causing this and did Relasping Polychondritis play a role in this? How do I stop this pass out episodes. Most of the time I dont even feel it happening. Sorry this was so long. But have you heard of this? Is my Echocardiogram ok?

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Yes, recently diagnosed after over a year of suspicion

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Hello @lbynum, Welcome to Connect. You will notice that we merged your post into an existing discussion on the same topic. I would like to bring @nibor63 @mcwilliamssr @rpwarriorlady @monikamouse @ethellee97 and others talking about RP into the conversation so that they can share their experiences with you.

Have you thought about seeking help or a second opinion at a major teaching hospital or health facility?

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Hi @mfogs7521,

I wanted to tell you about this other discussion on Connect, where a few members have posted about relapsing polychondritis:
– extreme outer ear pain https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

When were you diagnosed with this condition, @mfogs7521? Did you have specific symptoms that led to the diagnosis?

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I am sorry that I failed to answer you a lot sooner.
I do go to Duke University for my eyes as RP has done some damage there. I see a Optomalogist there. I have seen an ENT there as well. A surgeon for a possible CFS leak, my Rheumatologist thought I had, the imaging was poorly done at my local hospital. Thankfully I didn't have one. I believe the doctor that I see is really good, I still suffer with ongoing pain, swelling, I also see other doctors. An orthopedic doctor who helps with the damage in my spine, knees, hips. As well as other doctors. I am just curious as to what other treatments others have had. I have never used steriods except on two short occasions. I have had both knees replaced and can't risk the damage from Steriods. I have osteoporosis. Plus, Sojgrens, Hypothyroidism, Chronic Lymphocytic Thyroiditis, RA, MGD, and so on.

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