Update - have spoken to the consultant. Fluid without inflammation????

So after emailing the consultant (something you aren't allowed to do) I actually got to speak to him. The MRI results are back. I have fluid in my knees but no inflammation. This is the same as my hands. Excruciating pain, fluid in the joints but no inflammation. My ankles have now swollen up, my right ankle is huge. Rheumatoid physio confirms its fluid.

Rheumatoid physio says it's weird. I have all the symptoms of RA and I've clearly got fluid in my joints but no inflammation can be seen. Consultant at my request is repeating the anti-ccp as it had almost returned to normal last time - and yet I have so much pain I don't know where to put myself and limited movement in my joints.

The consultant says he can't remove the RA diagnosis (I asked as it's a total no no for the police) he says he thinks I've definitely got it but it's in its early stages. He says he's seen patients like me, who six months later come back with all their joints huge swollen because the disease has been stuttering along and then suddenly takes off with a bang. He said he has only ever seen one patient who did not have fluid in their joints and had RA. The trouble is the drugs are all geared to reducing inflammation and if you haven't got it then they don't work.

He is also wondering whether I had a an episode of inflammatory arthritis that left me with these problems. He says the pain that this can cause can be worse than when the disease is evident.

He is going to think about a 12 week treatment plan trying different drugs as he accepts I am becoming seriously unwell and he is now worried about this. He wonders whether the flu like symptoms and repeated fevers are RA or due to being in so much constant pain.

So the upshot is all my joints hurt and are tender, I've got restricted movement and am generally unwell but nobody is sure why. I don't have the symptoms of fibromyalgia apparently and inflammation was evidenced on several clinic visits so they aren't doubting that something isn't right.

Talk about having to fight and fight.

5 Replies

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  • I 'like' that you might be getting somewhere but it's horrible that you're having to put this much effort into obtaining a treatment plan!

  • Rheumatoid disease is so hard to diagnose, so many tests and it all seems a waiting game whilst we suffer greatly. Your rheumy sounds good and I'm sure will come to a decision on diagnosis eventually. I have a very good rheumy and he says he looks at the patient not the blood tests etc., sounds like yours is doing the same. hope you can get on some drugs quite soon and things start to improve for you xx

  • I'm hoping this is the darkness before the dawn for you. You are being taken seriously at last, which is a massive step forward and a treatment plan in the offing. Everything crossed for you. Hugs

    Jan

  • Seen a new GP this morning who has just finished a placement with the Rheumatoid team. She said I can see from across the desk your fingers are badly swollen. I think there is little doubt you have RA :(

  • I agree with new GP, with all you've told us. My fingers were swollen up big time at the start before RA showed in my bloods. All the people I saw medically said it was a sure sign too. Joints stiff and immobile as too much fluid around turn to let them move freely. I'm glad your GP can see it but wish you didn't have all this madness going on. Still thinking of you and sending hugs. xx

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