WEgner's Granulomatosis

I was almost initially diagnosed with Wegner’s granulomatosis instead of cryoglobulinemia. Once cryoglobulins were detected my diagnosis became cryoglobulinemia. Tests showed that I was negative for hepatitis C, so my diagnosis is now essential cryoglobulinemia.

not only is all that a factor but there was no lung involvement and no granulomas were found in either my lungs or kidneys…the presentation was not typical of Wegner’s, so more evidence was needed… eventually cryoglobulins turned up in a blood test.

My reason for posting this is that many of these autoimmune disorders share similar symptoms and it can make a clear diagnosis initially difficult to get. As a result some people with cryo are not diagosed with the condition until long after symptoms first appear.

Me :smiley:

Hi, what symptoms are you getting when you sleep? Also have you done a
temperature tolerance test to see if there is a specific temperature range
that causes a flare up.

-----Original Message-----
From: alcyon73 [mailto:cryoglobulinemia-fft-11820@lists.fireflyhealth.org]
Sent: Friday, 27 March 2009 8:03 a.m.
To: adrian@lush.net.nz
Subject: [cryoglobulinemia] WEgner’s Granulomatosis

Right now I’m virtually symptoms free. From my experience, I started having difficulty with arthritis like symptoms when the temperature got below 45 degrees and very quickly became seriously ill when exposed to 20 degree F temperatures.

I’ve not tried a temperature tolerance test. I’d have to stop taking the steroids to do that and I’m not inclined to stop treatment so I can find out where my limits are.

Me :smiley: