Am I going to sound like a hyperchondriac if I tell my GP about the “tired cough” I’ve had since I’ve been ill with ME and how I get breathless when I do too much and please can I have a referral for a chest xray to see if I have sarcoidosis?
And I’ve never mentioned it because it doesn’t seem to fit with ME but fatigue, headaches and cough were my first symptoms?
Yep I’m going to sound like a hyperchondriac.
But something about this story in the Telegraph, then subsequent reading about scardoisis, has made me sit with my mouth hung open thinking it could all fit.
“‘It’s possible you have a disease called sarcoidosis,’ the physician told me. I think he was enjoying the detective work, and I felt the same. Sarcoid (doctors use the short name), which sounds like something you might catch from the French president, is an inflammatory disease in which granulomas (clusters of immune cells) appear, most often in the lungs or the lymph nodes, though they can be found in almost any organ. In some cases there are no symptoms at all; in others, all sorts of debilitating disruption is caused.”
Now I know there’s a list of things I’ve wondered about in the past. The list of stuff others with ME have eventually been diagnosed with, the “do I actually have …” list.
Behcets Disease, Celiac, Chairi Malformation, Chlamydia Pneumoniae, Hypereosinophilic Syndrome, Kleine-Levin Syndrome, Orthostatic Intolerance, Polycthaemia, EDS and more. Actually I really wonder about Chairi Malformation and OI- the others don’t fit so well. But now I can add Sarcoidosis to the list.
The fact that there is little in the way of tests that are readily accessible on the NHS doesn’t help. So many conditions considered rare (so your GP says “oh no that’s incredibly rare, I doubt you have that”) makes me wonder how rare they would be if people as ill as me could just access the tests.
The silver lining (?) here is that there are limited treatments for sarcoidosis although Prednisolone is effect for a lot of people – but that LDN can also be effective with sarcoidosis and I’m already taking that.
Sigh. What to do. I’ve been here before – when to bravely ask for a test/referral and to push or when to not.