So anyone following this saga will know that after being told for ten months I had obvious symptoms of RA for which I also test positive. Suddenly in April after failing on four dmards I was told the symptoms I had weren't RA and must be just random pain with no cause. I was referred to a physio for an assessment as the pain in my knees must be mechanical. I was put on a waiting list.
I paid for an independent physio assessment and did not give them any background. The assessed me and said I had bilateral knee swelling and elbow swelling consistent with inflammation from a systemic disease like RA. I did not fit the profile for fibromyalgia.
Well today the NHS physio assessment took place. First question they asked why had the rheumatology physio passed me on to them to assess as they were muscular skeletal so this was inappropriate.
Then they examined me. Their view - my symptoms were wholly consistent with inflammation in my knee joints and my elbows there was no way this pain was mechanical and they could see nothing that wasn't consistent with RA. They have referred me back to the RA physio and told them they need to liaise with the consultant and get an answer for me as to why they have it seems discharged me when I am quite clearly very unwell!
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Helzbells
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Praying you can actually get somewhere with this and get some real help that leads to treatment and pain relief. I'm so sorry you've been given the run around.
Best ~
S
I can't remember if you're in the UK or not? If so, you are entitled to a second opinion on the NHS. Has this happened for you?
I agree with Nitrobunny you have been through a hell of a lot and you deserve some sensitive treatment and decent pain relief.
it is such a shame that some doctors act like dictators and can be so closed minded? i think you have plenty of scope to request a reappraisal of your diagnosis by the rhuematology department with a different consultant or request being seen at a different hospital altogether?
it must have been a huge relief that the physios were able to identity clear signs of autoimmune inflammation and discount fibromyalgia.
I really hope you can access decent sympathetic treatment now.
I am so sorry that you are being given this run around. I had a similar experience although mine was a registrar rheumy who overstepped the mark and I wore letters of complaint to the head of rheumatology, the hospital etc and also had a private appt with the head of rheumatology and told him how I felt about being dismissed as having fibro when I obviously had no symptoms that aligned with it and in fact believed that I was being dumped in the too hard basket, because, like you I have terrible time with drugs and had exhausted the DMARD list and a couple of biologics. It is not fair to just dismiss us as too hard. Fight back, I know it is hard and exhausting when you feel so terrible, but you are your best advocate. At this stage I have been rediagnosed with psoriatic arthritis so I can try cosentyx, with the proviso that if my symptoms change or I show signs that this is again an incorrect diagnosis we will revisit my diagnosis. Please don't let them treat you like a second class patient because you have a few more intricacies then the run of the mill patient, you are worth the same amount of time and effort as the next person. My very best wishes for you to get the help you need. Let us know how you go.
The funny thing is when they sent me on the living with arthritis course at the hospital they went through all the different types of arthritis and I remember thinking at the time that the symptoms for psoriatic arthritis fitted me much better than RA. I have a lot of pain concentrated in my elbows, spine and shoulders as well as the joints at the tips of my fingers
Well plant that seed. The registrar told me that because I didn't have synovitis showing on tje ultrasound that I didn't have RA so it must be fibro and I needed to see a pain specialist. I said no thanks and I don't accept your diagnosis based on knowing me for a total of 15 minutes. We argued on the phone and she was very dismissive. That's when I got cranky. Contacted the head of rheumatolgy and had a long conversation abput relationships of trust and being dismissed by someone in training. We discussed what else I may have and I agreed to think about the symptoms of PsA and get back to him. So here is where I am at today. You know you are right, you deserve to be treated as an intelligent person who knows their body. Be firm, keep repeating I do not accept your dismissive behaviour and tell them you are willing to discuss what else it may be, although if you have positive bloodwork then I find it hard to believe they are dismissing you. You are also entitled to seek other opinions. Good luck and don't stay silent.
Well hallelujah! Perhaps if they won't listen to you they'll listen to another NHS professional? Hope this actually gets somewhere.
A couple of weeks ago there was someone on here in a sort of similar position to you and not being offered biologics after failing on traditional DMARDs. Anyway, they were being offered Tacrolimus instead - another traditional drug that's presumably cheaper than biologics. So perhaps worth noting the name & asking about it if they start telling you there's nothing to be done.
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