Pre-digagnosis?

DanF

Hi all

New to the group, and I’m not sure I am in quite the right place here, as no diagnosis as yet. However, I have had joint pain in fingers and knees (and elbows and knees…!) for about 18 months now, intermittent but getting more regular. Its pretty moderate pain, but I am very fatigued when it flares up. I suspect to date a fairly usual (if frustrating) story;  following a couple of presentations to the GP, xrays (nothing remarkable) clear bloods, a 9 month wait for a consultation at the hospital, then an ultrasound (after a wait 😉). This showed evidence of early signs of arthropathy in hands (weirdly, nothing in my feet showing up), but judged equivocal given the lack of severe swelling and lack of indicators in my blood tests. I now have an MRI lined up for Jan.

I’m really worried about what comes next, mostly if there is a positive diagnosis, but also if not. At this point, I am honestly not sure which would be worse… at the moment, apart from the pain, stiffness in morning and being really tired, my day to day living is fairly as before… but I do worry about that changing, or getting stuck in the system long enough for permanent damage before any action is taken… and not being able to support family in the future and (etc!). I think the unknown is the bit which drives most of the concern.

For those of you who can remember, are missed diagnoses of early arthritis and other related conditions (esp. given some indicators on ultrasound) common? Or false positives on ultrasound? What are peoples experience of that prediagnosis stage? What happens if nothing definitive is found?

To be honest, writing this is a bit overwhelming, I know there are no answers or quick/easy/full solutions, but people’s perspectives on this would be much appreciated…

Thanks in advance 

noddingtonpete

Hello @DanF and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I think that a lot of us start of by experiencing pain in joints and initially ignore it until it gets really persistent and then go to the doctors. Also once you do get in to the diagnosis/test there is often, as you say, an overwhelming feeling of 'what next?' but that is what we are here to help you with. You will find that most of us on here have gone through similar so if you have any questions just ask. Also our website has a lot of useful information on arthritis conditions, treatments, as well as hints and tips.

You are definitely in the right place and among new friends so keep posting and please keep asking questions as you go through your journey and hopefully it will not be as bad as it may look at present.

Best wishes

Peter

jamieA

Hi @DanF

I know that we are all different - as are our circumstances, including GPs and hospital healthcare services we have access to.

Based on my own experiences my best advice to you is to not be a passenger in your treatment - try to be assertive but not demanding. Make sure you are given time to explain each of your symptoms. Keep a diary of events - when, what and where you have symptoms. Take a notepad to your appointments and list beforehand your issues - making sure to get time to raise them. Note the responses.

From my experience in the last 3 years I don't think inflammatory arthritis diagnosis nor treatment is an exact science.

I hope you get some help soon.

DanF

Thanks Peter and Jaime, some really helpful suggestions and good to know there is support as things unfold...