Meeting with a sarcoidosis specialist for the first time

At my request I was referred to a sarcoidosis specialist by my GP. The specialist happens to be a pulmonologist who typically focuses on lungs as a specialty.

I didn't know what to expect from the meeting and didn't want to get my hopes up, but it was quite interesting.

She mentioned that there is a monthly sarcoidosis meeting in New Zealand where doctors from all over New Zealand get together and discuss different patients and cases. She thought she remembered my case being presented there.

We didn't focus on my current treatment plan or my cardiac symptoms at all. I am fairly happy that my cardiac sarcoidosis is under control at the moment. The doctor also thought that my treatment seemed appropriate and effective.

I raised a few of my symptoms that I am concerned with being sarcoidosis, that isn't heart related and that my GP doesn't know what to do with.

Eyes

I mentioned that I have been worried about my eyes. I have blurred vision and struggle with my night vision when there is suddenly lights from oncoming cars.

My GP has just been referring me to an optometrist whenever I mentioned it.

The specialist said in her practice she normally sends patients to an opthamologist for review. Sarcoidosis in the eye can be clinically silent and there are two ophthalmologists in Auckland with a special interest in sarcoidosis. She would ask my GP to refer me to someone in my city.

Sinuses

I described how my sinuses improved when I started prednisone. And how it has now reverted to being almost completely blocked, and feel severely narrowed. I have not been able to breath at night when sleeping on my stomach.

She reviewed my sleep study, and agreed it's not sleep apnea.

She asked my GP to refer me to a Ear, Nose and Throat (ENT) specialist. They will likely need to do a biopsy to determine if it is sarcoidosis related.

Skin

She is not worried that any of my skin issues are sarcoidosis related. Apparently it is rare for fair-skinned individuals to develop skin sarcoidosis.

Thirst

I described how I had been thirsty since I was initially diagnosed with sarcoidosis. She was quite interested in this. She mentioned that it may be related to something called a pituitary gland.

She asked my GP to test me for electrolytes. If those are fine I may need to go for an MRI.

Genetics

I asked her if there was any genetic testing that we could do to figure out if my son would be likely to get sarcoidosis. I told her about my mum's cardiac arrest and my worry that she might have had sarcoidosis.

She said that there is no genetic testing that can be done. She also said that we will never really know if my mum did or didn't have sarcoidosis.

General sarcoidosis information

Something I found quite interesting was that she said that sarcoidosis doesn't often move to new organs after your initial diagnosis. Where it is when you get diagnosed is kind of where you will generally have it.

She also mentioned that a lot of research is being done on sarcoidosis at the moment, and we are likely to see some improved treatments in the next 10 years.

All in all, it was nice to have a discussion with someone knowledgeable and who took my concerns seriously.