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Anyone here have sarcoidosis?

(8 Posts)
Gincognito Sun 04-Sep-11 18:24:28

Just curious - recent blood tests (which are currently being repeated) have thrown this up as a possibility. I've had recurrent iritis for nearly three years hence the tests.

If you do, how does it affect you? Is fatigue a symptom?

idotry Sun 04-Sep-11 19:32:59

Hi had a bout of iritis which led to numerous blood tests that eventually showed up positive for the HLA-B27 gene. I also get back ache and my knees and heels ache and from there I was diagnosed with Ankylosing Spondylitis although the MRI showed nothing. I remember being tested for sarcoidisis (I think) but all was ok in that department. What I do know is that I get terrible fatigue.

Gincognito Sun 04-Sep-11 19:57:50

Hi ido, poor you. I'm HLA-B27 -ve and my spine x-ray was clear, the only abnormal result was raised ACE levels. I'm just keen for some answers as I've had 20+ attacks in three years. And fatigue, but then I do have a 10mo wink

Dilligaf81 Mon 05-Sep-11 23:11:33

Hi I had sarcoidosis when I was 16 (now 30) and for me it was extreme tiredness, massive weight loss (I didnt have any to lose) and had swelling of the glands around the body.
One side of my neck swelled like a frog and I had lumps all on my legs which was following the glandular line apparently.

I was really bad for over a year which bouts of stays in hospital and had steroid treatment.

I was only diagnosed as a specialist was visting the hospital I was in to see another patient and I got mentioned before then they tested for all sorts of cancer and I even got told that I was just being silly and needed a good meal and was anorexic.

I did have a couple of reoccurances within 2 years but they were short lived and I havent had anything since.
Looking back I was working loads of hours 7 days a week and under a lot of stress living in a tempoary home with the neighbours from hell (cutting peoples brakes, threatening to kill you all in your sleep) so I think my body just gave up and this is how it manifested.

Gincognito Tue 06-Sep-11 07:48:06

God Dilli that sounds horrendous!

I'm off to see the eye specialist again today, and will have my bloods repeated. Not sure what my GP will make of them though as she had to google them last time shock.

Metalhead Tue 06-Sep-11 09:01:15

I've just been diagnosed with suspected sarcoidosis follwoing a kidney biopsy. Similar to you Gincognito, I've had iritis pretty much since April - every time I stopped the eye drops it flared up again. I'd also been feeling really tired and run down all the time, beyond what was reasonably to be expected with a 1-year-old.

Subsequent blood tests showed high levels of inflammation (C-reactive protein), anaemia and decreased kidney function, which led me to the kidney specialist, who found I also had an inflammation in the kidneys.

I've now been on steroids for about 3 weeks and I feel so much better! It's a complete revelation to feel like a normal human being again and not want to sleep all the time...

Good luck with your tests, I hope it goes well.

Gincognito Tue 06-Sep-11 10:15:13

That's very interesting metalhead, thanks for responding. My case seems to be proceeding at a glacial pace sad As I said I have had iritis every 1-2 months for the past three bloody years, with hospital trips and follow-up appointments every time as my hospital are not happy for me to self treat. After a couple of years being fobbed off with oh, it's probably HLA-B27 related, an SHO finally ordered some tests. It's all so bloody convoluted!

Metalhead Tue 06-Sep-11 11:40:17

Oh I know, it's frustrating when you're feeling crap and you're not getting anywhere! Thankfully I've got some private health insurance through my work, which meant I got to see the kidney specialist really quickly.

Definitely worth persisting though until they find out what's causing your iritis and the fatigue. Like I said, I'd almost forgotten what it was like to not feel tired all the time until I started on the steroids! (Ok, they do have side effects, but I'm only on a low dose and hopefully will be able to come off them again in a few weeks time).

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