Marie

UPDATE - Hi - I originally posted in the morphoea page but need to update. I was sent to a general surgeon because of debilitating pain in my right leg, which I was sure was related to scleroderma. Lots of blood tests, a barium swallow test and I was referred to a LIVER specialist because there was a huge amount of smooth muscle antibody in my blood. I saw this man and the first question he asked me was " Do you itch?". Boy do I itch, but I assumed it was caused by the dry skin. He told me he thought I had Primary Biliary Cirrhosis, linked with CREST syndrome. All the pieces fit - the joint pain, fatigue, Reynauds. Apparently PBC and Crest can often be found in the same patient. I had a gastroscopy, which showed a Hiatus Hernia, also an enlarged gall bladder, and a biopsy which showed stage 2 PBC. It's nothing to do with alcohol and is caused by my immune system attacking my bile ducts, (that's how i interpret it anyway). Now I'm on lots of medication and yearly checks for now. The worst case scenario is that I may need a liver transplant somewhere along the line, but I COULD GET KNOCKED OVER BY A BUS BEFORE THEN! I found a website called the PBCers and it's been a great comfort and support for me. I wonder how many of us are there out there with a couple of overlapping immune disorders? Nothing's ever as bad as it seems at first. God Bless the internet.

Original story: I'm still trying to find out WHICH form of Morphoea/Scleroderma I have! It started with what I thought was a new birthmark around the age of 14. two years later I developed a bruise - like patch on my lower back. Over the next ten years my back shoulders and arms have turned into what looks like lizard skin, with brown mottling, a lot of tissue hardening and calcified patches.

I saw one skin specialist about 16 years ago who diagnosed morphoea. He said that mine was a very unusual case because of the mixture of brown and white patches, but didn't come up with any treatment or advice.

I later developed extreme symptoms of fatigue - and it's so hard to describe to anyone who hasn't suffered the effort it takes just to keep your eyes open!

Over the past 20 or so years I have had various periods of unexplained agonising pain in my joints - all of around two months duration. In between these times i am reasonably healthy, hold down a full time job and have raised 5 children.

The shape of my nose has altered and recently the brown patches are appearing on my chin and neck.

My doctor seems to have a vague idea of what scleroderma is but I went to one partneer in the practice with what I thought was a related symptom and was told that "Scleroderma is a SKIN condition" !!!!

I never know if my various symptoms are due to the diseaase or completely unrelated.

If anyone can offer me advice on how to get the right blood tests or diagnosis please contact me, Marie McKeown. In the meantime I shall CARRY ON REGARDLESS

Marie - family.mckeown@btopenworld.com