Discharged!!!: Hi All, hope you're all managing with... - NRAS

NRAS
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Discharged!!!

cliffhopper
cliffhopper

Hi All,

hope you're all managing with the cold weather. So went to clinic yesterday, discharged by rheumatologist because 'she can't find anything wrong'. I asked why steroids, hydroxy and methotrexate all improved my symptoms, the answer I got was 'it's just one of those things, and anyway hydroxy doesn't work on PSA (not what the BNF says!!). I asked why I was losing my hair, also one of those things apparently. I pointed out that I has enthesitis in my left knee and both achillies tendons (diagnosed by a physio), my toes are swollen and deformed on my right foot. I got shrugged shoulders and a comment about physios thinking they know things! We had the normal inflammatory markers conversation, I pointed out that when they were done I had just finished 7 days of 40mg of pred (doesn't make any difference to inflammatory markers apparently!!!!), and that enthesitis frequently doesn't result in raised markers due to them being relatively avascular structures. The only thing I achieved was not getting fibro put in my notes, leaving the appointment in floods of tears and nearly having a car crash on the way home because I was so upset. All in all not a good day out! The question is do I now give up and accept that I am the drug seeking nut case that the rheumatologist makes out, or do I find another rheumatologist because I know something is going on.

Take care.

14 Replies
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I would get another rheumatologist as there is something clearly going on

Definitely get another opinion, are you sero negative or were you dx with PSA. Is it the same rheumy who started you on all this treatment. I wouldn't let it rest there. Take care and good luck. X

Hidden
Hidden

How rotten for you. Awful to be dismissed like that. Ask for a second opinion.

Oh poor you I'm having the same problem 🤗🤗

A second opinion

50 % of those with PSA will not have raised esr or crp. If you respond to steroids and dmards there is inflammation going on. I would seek another opinion. These situations can wear us down for sure and can see why you are so upset. Lou xx

Can you talk to your GP about referring you to someone who specialises in PsA? Sounds like you need a more thoughtful rheum.

But do write to the PALs at the hospital as well, to challenge this discharge but also to complain about how the doctor made you feel. To me it's unforgiveable for a doctor to let a patient leave their consultation room in tears without so,e kind of acknowledgement.

Do not give up! U know your own body and it's up to them to find it. I'm still waiting for a proper diagnosis after 2 years. Diagnosed with Psa and given methotrexate injections which I never took as wasn't convinced. Now rheumy is saying she thinks it is nerve pain and not to take the methotrexate. When I asked why the cortisone injections took aay my pain she said "as it is a massive anti inflammatory it makes everyone feel better". What an answer and of course it's not true as if it were nerve pain it would not work.

I only tell u this as I am due to have MRI scan on 24/12 and then I suppose if they don't find anything I will be discharged. However that won't help me as I'm in excrutiating pain and sometimes can't walk. So although they can't find it yet they need to keep looking. I would ask for a second opinion which is what I will do if she tries to discharge me.

Thanks to everybody for taking the time to respond, I was beginning to doubt my sanity on this. I think some research is called for to find a rheumatologist that specialises in seronegative arthrtopathy.

Nessa28
Nessa28
in reply to cliffhopper

Please complain and ask for a second opinion . I’ve just done so felt sick doing it but now I’m glad to empower myself . I waited 15 years for a diagnosis and I won’t be flanneled. I’m zero negative AS supposedly . I responded amazingly to steroids so there must be inflammation . Dig out all your old letters . I found out today that our trust went on to a new computer system in late 2017 which means all my old records are sitting in archive . Question everything .🤞

Hi. I've just seen this post and wondered if you have sought a second opinion. I was in a similar situation and was discharged before being recalled when I had a bone scan. I was eventually diagnosed with psoriatic arthritis three years after referral to a rheumatologist. When the first rheumatologist discharged me I had already made up my mind to discharge myself and seek a second opinion anyway.

By the way, I took hydroxychloroquine on its own at first and it made a huge difference to me. I still wouldn't be without it. I don't know where anyone gets the idea it doesn't help; it's just that some people think it can aggravate psoriasis so it isn't usually prescribed for PsA.

Please argue go to Pals and insist on seeing a different consultant as you want a second opinion . I am in the same position as you expect all my meds are still in place . Everyone here helped support me doing this . I'm seeing a new one in April . Like you I was beginning to doubt my mental health . Sending you strength 🤗💐

Been there, got the t shirt, so sorry for you😐😢 Your Rheumy should give you an MRI scan, I think they do it with sideways segments, not in the normal way anyways, and it is how my original rheumy found out I had it, doesn’t usually show up on bloods etc. I thought I was going mad for years. Hope you get the help you need

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