I'm starting to lose my sanity over Rheumatologist

Wivenswold

I was diagnosed with Mild Seronegative Rheumatoid Arthritis in March 2016 by a Rheumy provided by my work's Private Health Plan.

Once it was diagnosed and I was passed back to the NHS, the problems started.

1st NHS consultation - the Rheumy had a go at me for not bringing all of my letters from the Private Clinic and when examining me kept saying, there's no inflammation. I asked for my GP to pass copies of private care reports to him for the next appointment.

2nd consultation - I saw a nurse who complained that there was nothing on my file. She asked a few questions and when I said I had RA, immediately disagreed and told me it wasn't spreading, the pain in my knee "could be anything".

3rd - Back with the Rheumy, he continued the "you haven't got RA" story telling me I had "Inflammatory Arthritis not RA" because I didn't have enough inflammation (?!)

4th - By now it had spread from my feet right up to my shoulders. Again it's not RA he says. I mentioned that I'd had a stroke-like incident, getting into bed one evening I went numb in my face and arms and had strange vision. I asked if it could be related. He referred me back to my GP who said there was nothing wrong with me but if it happens again, I'm to phone an ambulance.

Then a strange thing happened, I received my attendance notes from the Rheumatology appointment and they said "Mike, admitted that he doesn't think he's got RA". I emailed immediately to advise that I'd said nothing of the kind and requested that the letter was amended.

5th - Prior to my latest appointment I sent a list of symptoms and asked why my diagnosis had changed from RA to something that made no sense. I also pointed out that if his original diagnosis of RA was incorrect and I'm without a formal diagnosis, I could go back to my Private Healthcare provider for further cover. During the appointment he decided that it's probably a nerve issue, not RA and immediately put me on Pregabalin, thus cutting off my chance of getting a further private referral. This time he seemed genuinely annoyed with me throughout the appointment, even though I'm always very polite.

The odd thing is, the Private Rheumy and the NHS one is the same person. He made his initial findings based on damage found in my feet during an Ultrasound. Under the NHS he's sent me for basic x-rays for any area I say hurts and the result is the same, no damage found. However, I've read that X-rays don't show up damage until the condition is advance.

I went to my GP with a sore toe and 3 years later I've covered in pain, constantly exhausted and feel like my Rheumy is desperate to prove that I've got nothing wrong with me. I don't know where my head is at now, I've completely lost my self-confidence, I'm scared of calling in sick at work because I've convinced myself that everyone thinks I'm faking it. I've got an appointment with my GP next week but last time I tried to complain to her she said there was nothing she could do.

Has anyone had a similar experience when returning to the NHS for treatment? I feel like I'm being passed from one cost centre to another in the hope I'll give up and go away.

stickywicket

Hi there. I can see this is troubling. Let's take it from the top. Which DMARDS were you prescribed when you saw the rheumatologist privately and he diagnosed mild sero-neg RA?

As for the rheumatologist having a problem with your not bringing all of the letters from the Private Clinic, I think that's fair enough. The NHS has good intercommunicatons but it can't use what it hasn't got. Your rheumatologist should have warned you, when you saw him privately, that you'd need to bring all paperwork to any ongoing NHS appointment.

As for the nurse disagreeing with the RA diagnosis - RA can begin in the knee but this is rare. It usually begins in small joints and symmetrically. It's also rare for it to be sero-neg so not too surprising that there was doubt.

When the rheumatologist then told you you had "Inflammatory Arthritis not RA" because you didn't have enough inflammation what he probably meant was that your CRP levels, obtained from blood tests, were low. Another broad term for 'auto-immune arthritis' is 'inflammatory arthritis'. The meds are the same as for RA. OA, too, causes inflammation but the inflammation is localised to affected joints whereas, with RA, it is throughout the body. Did he mean you had an inflammatory arthritis or that you just had inflammation round the joint?

I don't see how the 'stroke-like incident' could be connected with any type of arthritis.

I don't know how private health insurance operates but I do know that diagnosing any particular type of arthritis can be very problematic. The good news is that, if it's an inflammatory type, the meds are the same whatever. Which meds are you taking besides pregabalin?

It's true that ultrasound is slightly better at detecting early damage than x-rays and also that damage can show first in feet even when there are no symptoms there.

Your GP can't contradict the rheumatologist but the fact is that you may or may not have RA or another inflammatory type of arthritis or you may have OA. Given that it's the same rheumatologist you saw both privately and on the NHS it's not as if they're contradicting each other. Nor is anyone suggesting you are faking it but that doesn't mean to say you have RA. You might have another sero-neg inflammatory arthritis or you might have OA (which can be treated by your GP) which is possibly causing nerve impingement. Possibly, only time will tell. Diagnosis can be very difficult and that's no-one's fault.

When in doubt about stuff I usually find a GP very helpful in interpreting letters from consultants, x-ray results etc. You have arranged to do this and I think it's a good plan which will probably clarify things for you. Please let us know how you get on.