Struggling with amount of tests and g... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,824 members5,405 posts

Struggling with amount of tests and getting any diagnosis

ColdHandsWarmHeart profile image

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

Written by
ColdHandsWarmHeart profile image
ColdHandsWarmHeart
To view profiles and participate in discussions please or .
Read more about...
5 Replies

That should be 23 yrs!

Barnclown profile image
Barnclown

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

ColdHandsWarmHeart profile image
ColdHandsWarmHeart in reply to Barnclown

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

zenabb profile image
zenabb

Perhaps you could be referred to a rheumatologist.

ColdHandsWarmHeart profile image
ColdHandsWarmHeart in reply to zenabb

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

You may also like...

Is it worth getting a diagnosis?

I believe I've had Raynauds all my life (in 46 now) . From chillblains as a child to my grandma...

Getting a diagnosis?

likely have Fibromyalgia. So it was left at that and due to GP's lack of knowledge of Fibro I have...

Diagnosed with Raynaud's but no blood test

diagnose yourself).  Anyway, the results came back clear but i had so many of the symptoms that I...

Is diagnosis important?

Hi, I have only just realised that I have raynauds after going to the Drs with...

General prognosis years after diagnosis.

always thought it might have been primary even though bloods always came back slightly positive for...