My Rheumatologist phoned last night.: I was surprised... - NRAS

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My Rheumatologist phoned last night.

Gigi71 profile image
6 Replies

I was surprised to receive a call at 7.20 last night from my consultant, in fact I had dropped off to sleep after a few hectic days with friends over from Portugal. I last saw her in July and because I was changing from Azathioprine to methotrexate I had to have an X-ray, I had already had a blood test the week before. Apparently my X-ray showed a small abnormality, but hadn't got any bigger from the one I had last year ! This was a surprise as I had gone to A&E with a severe pain in my chest on the advice of 111. I was extensively examed and one of the tests was a chest X-ray, they were confident it wasn't my heart, but didn't offer any explanation. I went to my GP a couple of days later he diagnosed costoconditus, inflammation of the connective tissue in the breast bone, if it didn't improve to go back and he would give me a steroid injection. It got better after about 4/5 weeks. I was happy all seemed well. Back to this year I had to leave a month between stopping the Azathioprine before starting methotrexate so assumed my X-ray was okay. She wanted to know what they said about the X-ray last year, nothing !!! Did I smoke, no have never smoked, so she is ordering a CT scan. Have to say am quite shocked, not had a good night sleep. I have a Dexa scan next week, also have to go to another hospital for the results of the results of a lip biopsy for a possible small skin cancer. I also have been having trouble with my left eyelid it won't open when I am tired or at night, so she is asking my gp to get me an earlier appointment with my eye specialist, I have glaucoma, which is controlled. Sorry to rant on so, it does get trying when it seems one thing after the other.

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6 Replies
nomoreheels profile image
nomoreheels

I was just thinking the more I read of your post it's the one thing after another & uncertainty which makes things feel as though it's all piling up but good to know your Rheumy has picked up on the x ray from last year. I hope you receive answers to your concerns, do keep us updated. x

Gigi71 profile image
Gigi71 in reply tonomoreheels

Thank you nomoreheels, I think you have put the nail on the head, it the uncertainty of it all. My local community hospital has clinics from 3 different health authorities so often tests don't get joined up, you have to do your own chasing up. After all these years I should be use to it. It's just being unaware there was a problem with my X-ray last year, that didn't come to light till now. Have just been to lunch with a friend so feel a bit less cross now. Will let you know how things go. Enjoy your weekend X

medway-lady profile image
medway-lady

It sure does sound like you've been through the mill. I hope your ok and I had costracondulitus it really hurts so you have my sympathy. But it does sound like your in good hands even though its a shock. So stay optimistic and try not to worry.

Gigi71 profile image
Gigi71

Thank you Medway-lady for you kind wishes, I am watching SU2C it somehow puts things in perspective. I know it will sort out in the end. You take care as well. X

Fennella02 profile image
Fennella02

Your story sounds familiar. In 2011, I was admitted to hospital with such severe chest pain that a P.E was suspected. A CT pulmonary angiogram revealed shadows on both lungs (but no PE), infection was presumed and I was discharged with antibiotics.

Fast forward one year and my Rheumy requested an HRCT and I heard nothing so assumed all was well. At my next appt, it was confirmed that the shadows were still present but even the head radiologist didn't know what they were! Anyway, I am now monitored by a lung physician and the shadows are likely chronic inflammation and/or infection but not hugely worrying.

I also went through 2 years of not being able to open my left eyelid properly. MG was suspected but all tests were negative. I was very worried but It has improved over time but still revisits every now and then and I will often feel quite ill at the same time - probably caused by lupus activity.

I hope your tests give you answers. Try not to worry to much - it makes everything much worse xx

Gigi71 profile image
Gigi71

My goodness how similar, sorry to hear you had to go through all that. I definitely feel better knowing its maybe not to serious. I think I was cross the hospital hadn't informed my Doctor last year, they are part of the same trust. This same hospital a couple of years ago, who X-rayed me in A&E and didn't see I had a fracture in my right ankle, this came to light when I went to the NROH in Stanmore for a checkup, I am under them for all my foot op's. It's also reassuring to hear you have a similar problem with you left eye. I think the rheumatologist does think it could be imflamation. I was diagnosed with lupus 31 years ago, but blood tests don't pick it up now. I am having physio on my back as newly dx with osteoarthritis there. I also have Hasimotoes, it seems you never just have RA. I am a positive person so thank you for sharing your experience. Take good care of yourself.

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