Berylliosis vs Sarcoidosis = Misdiagnosis?
The hour + drive up to Rutgers University Medical in Newark, NJ was pretty uneventful. A bit of construction still happening on the old Garden State Parkway — but nothing major. I made it there with time to spare for my 10:45 AM appointment with my Sarcoid specialist and pulmonologist extraordinaire Dr Andrew Berman.
The waiting room was packed. It was standing room only, and a few of us were waiting in the hallway. Between the people and the hospital heating system it was downright sub tropical in there. I knew Dr Berman was THE man, but I thought this was crazy. What I did come do learn was — this was not just his “crowd”. There were seven doctors seeing patients in this sweet of rooms. Plus this suite is also a LabCorp testing facility. So it was a packed house. Took me over an hour until I finally was called in to meet with Dr Berman.
This was a follow up visit to go through any possible current Sarcoid issues, as well as talk about visits with other specialists I had seen in the previous months. We discussed my neurologist Dr Hillen, and the uneventful and clean brain MRI I had a few weeks ago. He also asked more questions, and talked about something puzzling he saw in my 2005 bronchoscopy report. Here’s where things took a turn.
Dr Berman is nothing if not thorough! I was actually pretty amazed that he took the time to read through the mountain (and I do mean mountain) of reports and test results I had acquired for him from all my Seattle based Sarcoid doctors, labs, etc. There was one sentence in the 2005 bronchoscopy report that particularly jumped out at him. The pulmonologist that originally did the bronchoscopy and lung biopsy found a foreign substance in my lungs that, at that time could not be determined, nor was it tested further. The way Dr Berman spoke of this finding, it was something that he wanted much more info about. I wish I had a copy of the report so I could copy the line verbatim — but I don’t.
What it did trigger, was this (paraphrased) dialog:
Me: Maybe the foreign substance they found was the beryllium I was exposed to in my family business. My dad owned an electro plating shop. Long before there were OSHA standards, and safety equipment requirements, I had frequently “bright dipped” beryllium copper in straight nitric acid. The fumes from this reaction were always burnt orange/red, plumes that were thick and choking if inhaled. Though there were fans to exhaust the fumes — without proper respirator masks — we all had to have inhaled some of those beryllium fumes — many times.
Dr Berman: Why am I only hearing about this now?
Me: I thought you may have seen it it any number of the reports you had.
Dr Berman: Um. No. This is important.
Me: Yes. I know. Beryllium exposure can mimic or cause Sarcoid.
Dr Berman: Actually, berylium exposure can cause Berylliosis — which can mimic Sarcoidosis — not cause it. Without all the propper information, or tests, it can go years being misdiagnosed.
Me: So what are you saying? I don’t have Sarcoid?
Dr Berman: It actually doesn’t matter — in the long run. But with the way your symptoms present, it’s more likely you have Berylliosis rather than Sarcoid. Either way, the treatment — when needed — is still the same. Knowing you were exposed to beryllium paints a different picture.
Me: How much exposure is too much?
Dr Berman: Good question! But no known answer. It may only be once, for someone who has become “sensitized” or allergic to beryllium. And you were exposed many times.
Me: There were others in the business who were exposed to it. Why didn’t they get Berylliosis?
Dr Berman: They were not sensitive or allergic to it — and you may have been. You may have been geneticly predisposed and have beryllium sensitivity or allergy. No one knows — yet. But in the scheme of things, it really doesn’t change anything for you. Berylliosis causes the same autoimmune responce as Sarcoid — respiratory inflamation, granulaoma formation, scarring, and other issues. That’s why they are easily and often misdiagnosed. But had you NOT been exposed — you may have lived a quite different life and we may have never crossed paths.
Let’s just say … my mind is realing right now. A different life? Yes. I’ll have one of those, please! It’s bottom line time! It really doesn’t matter! Nothing changes! I was exposed. This did happen. There’s nothing I can do about it. Live with it. Move On.
That all SOUNDS good, and even rational. Might have a little anger to work through though. This disease has consumed the past 11+ years of my life. It’s contributed to a cascade of ill health, a broken relationship, losing my home/condo, and countless years of anguish over the whole disease — whatever I have — whatever they call it! Still the same result. Still the same cautions and treatment.
But as of this moment — it really doesn’t mattter! It really is ancient history. Today is today, and I’m feeling kinda okay. Maybe.
I need time to process all this. That’s a large pill to swallow — metaphoricly speaking. Normally I’d post a lot of data, and medical explanations. But today I won’t. I just need time to process. This is a start. Giving voice to frustration — and most likely — that will be that.
Berylliosis vs Sarcoidosis = Misdiagnosis? Yup … that pretty much sums it up.
Processing. Processing. Processing.
Berylliosis : National Organization For Rare Disorders
Sarcoidosis : National Organization For Rare Disorders
Diagnoses of Chronic Beryllium Disease Within Cohorts of Sarcoidosis Patients — PDF