Just want to know what it is!

[Lauralou89]

Hello

I'm new to this site and I've come for a bit of a moan. I was referred to the rheumatologist by gp with what they thought was RA. I am having pain in my hands, wrists, elbows, hips and knees but I'm not getting twinges in my ankles and jaw. The rheumatologist didn't seem to think it was RA from the examination and normal blood work but ordered a ultrasound of my hands. This happened a month later and it has shown inflammation around my finger and wrists joints/ tendons. This is where it has been left, I have no idea what this means. I've been told I'll get a follow up appointment but I'm in constant pain and the thought of waiting another month just to see someone is getting me so down.

Anyone got any experience of anything like this? Just don't know what to think thank you

[flow4]

I'm sorry you're in limbo like this, Lauralou. It happens to a lot of us who are sero-negative (normal blood tests) unfortunately. You will probably have to become a bit, um, persistent with doctors...!

Inflammation in your hand/wrists could mean RA, but it can happen for other reasons... Really it will take a rheumatologist and/or radiologist to interpret the ultrasound scans - they're much more difficult to 'read' than x-rays. I'm in a similar position, although my scans showed both inflammation and small erosions and the rheumy has now diagnosed 'low level' RA. I didn't get a follow-up appointment through promptly, but phoned the appointment line to arrange one, probably a bit quicker than it would have come through if I'd just waited.

Meanwhile, you might find this website interesting. I am pretty sure enthesopathy is what causes a lot of my pain... The rheumy isn't very interested in it, but doesn't have another explanation and it is another piece of the jigsaw for me... enthesis.info/

[scotslass333]

Hi - yes I agree with what flow 4 has said, diagnosis of RA can be difficult, I was just like you at the beginning, nearly 3 years ago now - "just tell me what it is, definitely!" - I think humans in general and definitely me don't like uncertainty! "It might be this, it might be that" drives me crazy, but I've had to learn patience, and to trust my rheumy. "Inflammatory arthritis which we will treat as RA" was the best they could come up with. As flow4 says, this is where you need to be proactive, and persistent, and keep trying to get appointments brought forward when you can. And read as much as you can, all the info on nras site will help. We have to become our own"experts", and sadly I now know a heck of a lot more than my GP does - this is quite common! I wish you all the best, and we're all here for you. xx

[Hidden in reply to scotslass333]

Very eloquently said. Thanks! Doreen

[Hidden]

This sadly seems to be more common than I thought. I was here thinking I was the only one going through this but it seems to be the norm if your bloods are "normal". I was sent to Rheumy March 2014 and was diagnosed after scan of hands showed inflammation and erosions and I was given Sulfasalazine which I had to stop because of bad reactions and then MTX which did start to ease the pain but I had to stop because of throat issues (which I still have). I was then told Hydroxychloriquine was the next thing to try but I had concerns over my eyes (this is a side effect of this drug). In April 2015 I saw a Registrar who discharged me saying I couldn't have RA as I have not had any relief from the DMARDs they tried and my blood test show normal even though I hadn't had a blood test for 6 months previous. I questioned this and 2 Rheumys agreed with the registrar and I was discharged back to GP with diagnosis of Fibromyalgia and osteoarthritis. I complained to PALs because I had been given DMARDS for something they are now saying I dont have and these drugs had caused me illness and the loss of my job. PALs set up a meeting with a Rheumy who agreed to do another scan and they were supposed to see me in 6 months. That was nearly 8 months ago. My GP has written to them for an urgent appointment but I feel they are hoping I will go away. I am in constant pain, mobility issues and terrible fatigue and just want some answers but feel I am on my own. Hope you get more luck. Gentle hugs Joolz.xx

[oldtimer]

It can happen later on as well! I had a classic presentation at the start and was quickly given a diagnosis of Rheumatoid Arthritis although I was sero-negative.

but over the years the diagnosis has been questioned, even refuted or changed on occasions, only for my body to produce some classic features again - I just accept that I have an auto-immune inflammatory arthritis and don't bother too much about the label.

The important factor is to get some effective treatment which often has to been done by trial and error unfortunately