Getting a RA diagnosis

rach41

Hi I was referred to rheumatologist at the end of January following foot pain for a year, ankle swelling since Christmas and then out of nowhere finger stiffness in the mornings. Since the end of January I've also had neck stiffness. My blood test showed a anti-CCP score of 24 but RF, CRP etc were all normal. I initially had a video call with rheumatologist who told me he was pretty sure based on symptoms and blood test that I had RA but he wanted to see me in person. When I saw him, he dismissed pretty much every pain I was having as tendinitis and couldn't see any swelling, but sent me for an ultrasound on my hands and feet and MRI on my ankle. Before the ultrasound I had a steroid injection in my left shoulder to treat a long running rotator cuff issue and noticed that the finger stiffness reduced dramatically, however as I had the ultrasound already booked I went ahead with it. Frustratingly they couldn't see any signs of synovitis in my hands or feet though acknowledged I had some issues with my feet and suggested an MRI on these to get a better view. However I don't know if health insurance will cover this given it isn't rheumatoid related. Anyway I am having the MRI on my ankle next week but my worry is that will come back with no signs of RA and I'll be left with no conclusion for the pain. I'm not sure the rheumatologist is going to care about the steroid injection potentially affecting results. But wanted to see if anyone else out there has had ultrasounds that have shown nothing but they have ended up having RA? Just wondering whether in early RA would it show up? I had a really bad flare up at the start of February where I could barely walk with foot and ankle pain so bad, but my feet over the last week or so haven't been that bad. Just feels like unless they see you at the right time they miss when the symptoms are bad?

Sorry for the long post but my initial call with the Dr convinced me I had it and now he seems to have backtracked and test results haven't done me any favours. I worry I'm going to be discharged and then I'll get another flare up and won't be able to do anything about it. I was referred to private rheumatologist as there is a 40 week waiting list to see a rheumatologist in my area, so feel like if I miss this chance to get diagnosed through private I'll have to live with this pain for another 9 months before getting seen again.

Any advice much appreciated

rach41

Oh and he also dismissed my neck pain as being osteoarthritis (I'm 41) as you don't get neck pain with RA according to him, I didn't want to question him as he is supposed to be the expert but I have read that neck pain can be a symptom in RA? So he hasn't bothered running a scan on my neck, but feel it should be taken into account along with other joint pain

Fever

Hi Rach41, I'm sorry to hear of the pain you have been in. I don't have any experience with receiving a diagnosis for RA but I wanted to say hi and that I wish you well. I do hope that whatever the problem is, it shows up in your scan results and you can get the help you need.

Welsh1

Hi I have RA pain in all the areas you mentioned intially feet a issue but damage doesn't show up on xrays similar issues to you neck pain rotator cuff injury which since I have been on RA meds has settled mine started fingers toes and wrists. I would pursue it best of luck. My bloods showed positive in the RF and the others.

rach41

Thanks that's useful to know, just feels like there must be something going on for all these aches and pains to have started all over a 1 year period, they must be connected. Fingers crossed the MRI shows something on my ankle! As much as I don't want RA, at least it would mean I would get treatment to resolve the pain.

Naomi33

Hi @rach41

I like you was suffering and did not know what to do at the beginning of my RA.

I was advised to record pain and take photos of flare ups to show doctors and consultants, which I did and was treated and advised at the very early stages thankfully.

I was persistent and was diagnosed as you did not wont it but needed to know what was wrong to deal with me to carry on with life (new life) as best I can.

Still learning but with the help of the VA website feel more confident🤞😘

Best wishes @Naomi33