Okay so as you know my hospital decided I didn't need treatment and I couldn't have inflammation in my knees if they couldn't see any in my hands although I had fluid in my finger and thumb joints. This was entirely contrary to the view they expressed in all my examinations to that point (the point being I don't qualify for biologics and am allergic to dmards
The consultant said they would refer me to physio as it was just something mechanical probably.
Heard nothing from the physio called and found out it had been put as a routine and the wait was 4 months. Bear in mind I had already waited 4 months for the ultrasound and was not alllwed any treatment whilst waiting for it. I was in tears in the scan saying I am in so much pain.
This week in desperation I paid for a physio assessment. I did not give any background to the physio but just asked them to assess and say what might be the problem.
So he says obvious and significant swelling in both knees wholly consistent with inflammation to the knee joints he did not know how I was managing to walk in so much pain. Same in my elbows and swelling in my thumbs. He was adamant that none of it was due to mechanical issues and suggested I see my doctor straightaway for blood tests as he felt I was showing all the symptoms of a systemic illness and his worry was it was RA! I then told him the background and he was astounded as he said it was obvious
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I agree with james53, get a copy of his written report & send it to your rheumatolgist & GP. Then send a complaint & a copy to your country's health board.
Oh my goodness thank heavens for that physio!!! It's just this kind of run around that makes people question their sanity and feel like giving up. I definitely agree with the previous posts and hope you can use his report to get something done that will be of benefit to you. Pain is mandatory in life to some degree or another but suffering isn't. You should not have to suffer because a doctor can't see what's right in front of him/her. It really makes you wonder. My father says people like that cannot pour p*** out of a boot with the directions written on the heel. Hang in there!
Just a thought. If you paid for a private physio assessment might it not be a better idea to pay for a private Rheumatologist?
They are the only ones who can diagnose RA or other syndromes and determine what treatment to give you and you seem to have trouble with the one you've got now.
I really don't know how your health system works but I have read others paying for a private Rheumatologist and then switching back to NHS to obtain the meds.
I wouldn't recommend paying. My mum did for me -and then I was referred to the same man on the NHS though you wouldn't have known it. Needed help when I was at the private consultation but changed his mind (on everything he'd said and concluded) when I was on the NHS and out of the 3 specialists I've seen he was by far the worst (NHS version of him that is). If they don't send for x-rays of joints they can write anything they like about your condition on the records - all that matters for them not getting sued is that the recorded history looks correct - there are never any checks on actual patients to check on the quality of the doctor's work which is how terrible doctors manage to stay employed. Thank goodness not all of them are like that.
I really feel for you. I ended up paying to see a Rheumatologist privately as I was no getting no where with doctors who decided I needed to see an orthopaedic surgeon for my shoulder and both feet. I chose one that worked both privately and in the NHS, and who came highly recommended. I got an appointment with her within a week and she has been brilliant. I was diagnosed with RA at the first appointment and started on drugs straightaway - the first lot made me very ill unfortunately but then was swapped to mtx. I saw her three times privately and during this time I went back to my GP armed with my diagnosis who then referred me to the NHS rheumalogy dept at our local hospital and asked to keep the same consultant. The consultations weren't cheap but worth every penny. Plus you have to pay for prescriptions initially but the three most common dmards are very cheap. Now I am completely swapped to the NHS and get excelllent service from our local hospital. If you haven't had a definitive diagnosis at least seeing a consultant privately should mean that you will know whether or not it is RA - if it isn't then at least you have ruled that out. Good luck
I did the same for my hips- I had hip dysplasia and needed operations on both- broken n pinned back together. My GP told me it was 'muscle ache'. When he finally referred me on, the NHS consultant said my area didn't do the op and gave me a leaflet about where to buy / hire wheelchair s. I was in a wheelchair for about 2 years but in the meantime found a private Dr in London . He did the first hip privately and then the second on the NHS. Eventually, he wrote to my my GP asking them to refer me to a local rheumatologist because he suspected PSA. My GP told me he thought I was just 'anxious' about my other joints because of what happened over my hips. Ha! Wish that 's all it had been!
Having said that, I am very grateful to the NHS. Going private in order to be listened to shouldn't be necessary. I wish more money was pumped in!
But, going private, if you can and if you pick the right one, before going back to the NHS, can be a lifesaver! Ironically, I'm almost back in a wheelchair now ( mobility scooter)- but I had an extra few years x
Have you seen a copy of the DR's letter? Perhaps obtain one and send it with a copy of the physic report and a short summary of your journey to your local CCG and PALS ( I'm assuming you're in the UK)
And get a second rheum opinion - you're entitled under the NHS, but go private if you need .
I would recommend asking GP to refer you elsewhere. However I wouldn't advise you to complain. Physio opinion will be looked at as being vastly inferior to that of a doctor and likely ignored. Complaints also lead to files being removed from the system so it can affect your treatment temporarily when you go to the hospital and there's no patient file for you.
The stupid thing is the hospital diagnosed RA. They treated it unsuccessfully for 10 months because I was allergic to the dmards. It's only when they said I didn't qualify for biologics funding wise that this started.
At the scan they didn't deny I was in pain. They insisted I had RA just the inflammation wasn't showing on that day. The consultant that was in supervising said I should go back on the waiting list for my knees scanning but the specialist doctor overseeing my case said I couldn't have inflammation in my knees if I didnt have it in my hands and that I should just see my doctor for some painkillers. This is the same doctor who at every previous examination had told me the swelling in my hands, knees and elbows was RA. I can't even bend my fingers enough to make a fist
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