Scleroderma & Raynaud's UK (SRUK)
6,871 members3,247 posts

Struggling with amount of tests and getting any diagnosis

Hi everyone,

I have suffered severely with raynauds for 2yrs now. It hasn't been managed well and I have tried everything to help myself. I can't take Nifedopine? as I have a bad reaction to it so have been down every other avenue!

I had a bad back earlier this yr and it's still v painful. I was off work for 6 wks. X rays showed extra bone growth in my lower spine and some sclerosis of the bone. Mri came back clear. Blood tests had high bilirubin and low white blood cells. Have a liver and gall bladder scan in a couple of wks. Doctor is baffled. I have suggested this is all part of the raynauds. I'm linking a few things together from previous apts with a Chinese herbalist. I'm a fit n healthy slim active woman. I'm wondering if any of you have had similar results or think this could be start shcloderma? I have also had heart scans to see if that was causing the raynauds and have had x rays on my hand as I have a huge lump on my index finger knuckle (palm side). All came back clear!!!! Any replies much appreciated.

Mel x x x

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That should be 23 yrs!

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hello. just an idea: have you been examined by a rheumatologist expert in autoimmune conditions including connective tissue disorders (lupus, sjogrens etc)? i can't take nifedipine either, and i have systemic lupus + sjogrens. my version of raynauds is simultaneous with erythromelalgia. i also have a chronic spine condition involving osteophytes. wishing you all the best. coco

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I was ref to rheumatology last yr, nothing came of it but they didn't really do many tests. Checked me for arthritis n sent me for a heart scan. All clear. Maybe I should get re referred x x x thank u

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Perhaps you could be referred to a rheumatologist.

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I was last yr....nothing came of it x x x

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