Tests, Tests, Tests!

Hi Everyone, Hope you are all doing well.

I've just received a letter in the post from the hospital with the dates for my next lot of scans. I'm still being investigated for possible lupus, currently I have been diagnosed with undifferentiated connective tissue disease.

over the past year and especially since my first Rhuemy appointment in December I've only had a few tests done which almost all came back negative or just showing inflammation and it just got me thinking it would be really interesting to ask which tests you have all had and whether you've had similar experiences of negative tests?

Blood/urine tests excluded I have had:

- Chest X-Ray (x2)

- CT Pulmonary Angiogram with contrast

- ECG

- Pelvic ultrasound

Upcoming tests:

- MRI Head with contrast

- MRA Carotid both

- MRV Venogram

- MRV Cerebral Veins

Would love to know if any of you have had any of these tests and how they went for you, especially the ones I have upcoming as this forum always has the best experience story's and advice!

3 Replies

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  • Hi I haven't had any of those tests apart from waiting for an MRI brain. My tests were bloods to check for inflammatory markers , along with liver, kidney , thyroid etc. Then I had a skin biopsy , after seeing rheumatologist I had more blood tests for specific lupus antibodies and urine test. Only my skin biopsy and lupus antibodies came back positive for lupus and hence my diagnosis. Hope this helps x

  • Hi Newman

    Out of your upcoming tests I have had the brain MRI when I was first I'll. I think they do it routinely. Your other tests are more specialised. I've had the ones you've had in your other list. Suffered for years with chest pain and recently been prescribed Colchicine for it which has helped greatly. Diagnosed with serositis . You might be interested to know that I've been diagnosed with UCTD for 30 years. I know that it can lead to a more specific diagnosis but in my case it hasn't and probably won't now!. I guess this is what your docs are trying to do so don't despair if it doesn't happen. Treatment stays the same so you won't miss out. It's good your being well monitored which is important with this condition!. Good luck with those tests, keep us posted and I hope I've been helpful. X

  • Full Lupus Panel Bloods monthly; X 18; (then 3 monthly then monthly). Head to Pelvis C T Scan; Bone Density Scan; Chest X Rays; Lung Lavage; Gastroscopy; Bronchoscopy; Colonoscopy; Eye Exams; Intermittent monitor (1 week every few months) of waking B.G.L.; Lung Function testing X 2 annual. M.R.I. Knees. Punch Biopsy of skin spots as required.

    M. G. U. S. blood testing 6 monthly. Urine test monthly.

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