Those Symptoms Sound Familiar … Or Is It Hyperchondria?

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.

http://www.telegraph.co.uk/health/men_shealth/7843500/Sarcoidosis-Mystery-illness-poleaxed-me-and-perplexed-my-doctors.html

“‘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 SyndromeOrthostatic 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.

UPDATE: I missed a couple of my misdiagnosis list: Sjorgens Syndrome, Lyme, Lupus, Leaky Gut Syndrome and Thyroid (even-though-GP-say-normal)

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5 Responses to “Those Symptoms Sound Familiar … Or Is It Hyperchondria?”


  1. 1 ashysheela July 13, 2010 at 9:44 am

    It’s a good article, nicely written. If you are worried ask your doctor, they may be able to put your mind at rest without even going for a scan, by talking through your symptoms or even finding the reasons for your cough etc.

    One thing i would say is that “post-exertional malaise” would not come in the same way from Sarcoid, you would just be knackered in a more straightforward sense. You could have both things but that really would be unlucky!

    • 2 rachelcreative July 13, 2010 at 10:17 am

      Yer I remembered about post exertional malaise about twenty minutes after i wrote this post. Forgotten about in a foggy brained fashion.

      Perhaps I should have called this post “Clutching at Straws”. I already know I’d rather this be an illness with a diagnosis that some clinical test (which the NHS perform and can interpret) be pointable at – than to have ME/CFS and be cast off in a sea of uncertainity with patches of disbelief.

      • 3 ashysheela July 13, 2010 at 1:17 pm

        yeah, i know. At least i have one part of my illness that has been diagnosed with actual testing – it has made a big difference to me and has helped me to stop disbelieving in both ME/CFS as an entity and also that i have it, whatever IT is!

  2. 4 Sue Jackson July 14, 2010 at 11:00 pm

    Yes, yes, yes!! Definitely talk to your doctor. My doctor is always saying, “Don’t ignore any symptoms! Just because you have CFS doesn’t mean you can’t get something else.” She encourages me to tell her about anything new or changed.

    The breathlessness could be from OI (which you almost certainly DO have – over 95% of CFS patients have it).

    Coughing is NOT a common symptom of CFS and should absolutely be checked out thoroughly. In fact, a chest x-ray is supposed to be one of the basic tests run before a diagnosis of CFS is considered – it’s necessary for ruling out other conditions which can mimic some of CFS’s symptoms.

    Definitely get it checked out – and let us know what happens!

    Sue

  3. 5 Jo July 15, 2010 at 8:44 am

    I know a woman whose daughter died of pneumonia because her doctor thought it was her fibro. I don’t want to sound alarmist, but Sue is right, you should get anything like this checked out.

    I’m always envious of our US blogging friends who are always getting this or that test. But the way they fund their health system is different and I guess if we could all get the tests we wanted we would bankrupt the NHS. However, I think you make a good point about the rarity factor. How do they know it’s rare if they don’t test for it? Maybe the only way to get a test is to ‘put the patient’s mind at rest’. So I think it is worth mentioning that you are concerned it might be sarcoidosis. I find (having health anxiety myself) that there is usually a very good clinical reason why my symptoms aren’t what I fear they are. E.g last year my heels went numb and I thought I was getting MS, but the doc described the sort of numbness with MS and it was very different to mine.

    I don’t think you sound like a hypochondriac, just someone with a load of awkward, chronic health problems and with questions that need answering. 🙂


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