Connective Tissue Disease

[Zamalek]

When I was first diagnosed in 2007, I was told I had mixed connective tissue disease, APS, Sjogrens like symptoms. I have never had any further tests for CTD though continue with extreme fatigue and muscle and joint pains. These can be severe for months, and then stop, only to begin again at random. I cant pinpoint a specific reason when improvement does occur.I dont believe it is anything to do with my INR, as when high I can still feel lousy. Is a diagnosis of CTD quite common with APS, and indeed is it a CTD disease itself, as I believe it is the lining of the blood vessels that are compromised. Thank you

[lupus-support1 Administrator]

CTD is a “catch all” when a specialist is unable to give a specific disease such as systemic lupus erythematosus.

Since many people have more than one autoimmune diseases this is understandable. However, this doesn’t mean the patient should not be treated as if they have lupus, which was Dr Graham RV Hughes view. It took him 18 months before giving a diagnosis because a wrong diagnosis causes a patient great distress.

My advice is for you to keep a diary & record all symptoms.

Write down ALL medical problems since childhood even though they may seem irrelevant. Include psychological conditions such as depression & anxiety.

I would ask your GP for a referral to see an expert in SLE.

If you want to discuss this further, you can join LUpus Patients Understanding & Support (LUPUS) on HU where I am also an Admin.

With good wishes,

Ros