Feeling confused even more now!!

[Chelle82]

Well I went to see the rheumatologist today and tbh I wasn't very impressed told her how I have been the past few months and answered all her questions! She had a feel of my joints and tried to get my wrists and hands in certain positions but was very sore! She said she doesn't think I have RA but carpal tunnel syndrome, I've to go and see a nerve doctor then a surgeon, also to go see a podiatrist about the pain in my foot! She took new bloods and X-rays of my hands and feet! I'm just not sure what it all means now as doesn't explain the pains in my hips and knees, she said she could feel my knee cap well and didn't feel any excess fluid but today my knees have been ok, it's my hands that are in agony! I'm just feeling in limbo just now had such high hopes for today! X

[Livingston]

You're feeling let down because you came away without a firm diagnosis and with a provisional one that wasn't what you expected. It really isn't at all uncommon not to be given a diagnosis on a first, second or even third consultation.

The neurologist & the surgeon will be able to clarify whether or not you have carpal tunnel - & to treat it if you do. If they don't think that's what is wrong with your hands, it'll be back to the drawing board to consider what else the problem might be. Sometimes, working out what it isn't is an important step on the way to working out what it is!

Podiatrists/orthotists have been far more useful in addressing my sore feet than anyone else. I think I'd be off my feet completely if it wasn't for the help I've had in that direction. Going to see one has the potential to really help your foot pain (and possibly your hips too.)

Xrays of hands & feet are often done at a first meeting - they can see any early erosions, but importantly, use them as a baseline as they monitor you over time to see if things change. Same goes for bloods - sometimes the story of what's wrong plays out over a whole series of tests.

Being in the dark isn't a nice feeling but your GP (and depending on local policy, maybe you as well) should get a summary letter in a couple of weeks time. The findings from the xrays & bloods should be in there. If you phone the practice secretary to make sure the letter has arrived, it might be worth getting an appointment with your GP so they can go through the results with you. You haven't been dismissed today and some things have been set in motion that might help your pain/help you move towards a diagnosis.

In the meantime, it might be good to start documenting symptoms and taking photos of any redness or swelling as these things can change very quickly. Take this evidence with you to any other appointments.

Not knowing & having to wait for all these things to happen can be very frustrating. Try not to let it get you down - easier said than done, I know. Once you've seen what comes out of these tests and next appointments you'll be in a better place to know what you want to do next. And in the meantime if any new symptoms develop, take them straight to your GP - it all helps with building up the picture.

[Chelle82 in reply to Livingston]

Thank you very much for your reply Livingston, after having time to digest what was said today, I know ur right, things are going in the right direction, I just need to be patient and see what happens ! Xx

[Jacki08]

Hi-- I feel so sorry for you. It took me 4.5 years to get a diagnosis. I had a nerve conduction test which showed I had severe carpel tunnel in both wrists and was told I needed an operation to correct this. I pushed and pleaded for a scan of my hands-- so glad I did-- it showed inflammation and proved that I have got RD. I was started on hydroxychloquin and mthx and within 6 months my inflammation had reduced enough to take the pressure off my wrists and my carpel tunnel has disappeared - no operation necessary. Keep pushing for more tests-- it's you that is suffering the pain ☺

[Chelle82 in reply to Jacki08]

Thank you, sounds exactly the same as me to be honest! I really don't want the operation! The pain in my hands is unbearable! Doesn't help with my job, I work in a bookies and constantly use my hands! I only work 25 hours and have been lucky that I have been able to still go to work but i am really struggling xx

[Jacki08 in reply to Chelle82]

I've had no carpel tunnel symptoms at all since the inflammation was reduced -- please ask for a hand scan xx

[cathie in reply to Jacki08]

A lot of rheumys seem to rely on Mri scans for diagnosis of synovial swelling. It can take a while to get this, here waiting is 12 weeks. You learn what they mean by patient!

[Victoria-NRAS Partner Moderator NRAS]

Hi Chelle

As others have said, conditions like this can take a while to diagnose. Having said that, if you feel after having time to think it through that the diagnosis doesn't fit all the symptoms, it would be worth noting down the symptoms you query and any other questions you have, so that you can discuss it with the rheumatologist or the other specialists you are being referred to. If it comes to it, you can of course seek a second opinion as well from another rheumatologist, but might be worth getting the opinions of the other specialists first.

Kind regards

Victoria

(NRAS)