The Long Road to RA Diagnosis

Ave Sodalis

I'm getting increasingly frustrated about how long RA is taking to diagnose. It's been 3 years since the symptoms started to show in my hands, and still the blood tests are negative. My GP (or the doctor who has replaced my GP due to her being off with voice strain) tells me there's nothing else it can be but is waiting for the blood tests to come back positive, or so I assumed. However, at my last meeting with him, he told me if these tests come back negative, there's nothing really they can do. I got the feeling he was wondering why I even bothered coming in. They came back negative.

Three years ago, due to difficult working conditions, I had very severe hand problems (along with a range of other problems). I was 19. My hands were almost completely seized shut. I had to force them open to continue to work and I had trigger finger in all fingers when I did get them to open. One particular day about 3 months in, I could not force them open at all and I had to get my boyfriend to dial my employers number to tell them I couldn't come in. Of course, she didn't accept this and I had to come in anyway, even though I was actually on medical leave at the time. She "fired" me later that day due to the fact I was utterly useless at that stage (fired being in inverted commas because I had already tried to leave before).

They haven't been that bad since I left but it's been up and down. Some days they're almost fine. Some days I'm constantly rubbing them to try and get them going better. The bad days are usually after a busy day the day before but otherwise at random. Some mornings just opening them is enough to stretch them into moving. Other mornings, like this morning, I've to go a while with one or both my hands curled up until I can get them stretched enough to open up, and then moving. Some days it feels like I have perfectly normal hands, other days it feels like it would be easier just to cut off my hands and work with fake hands. Thankfully, I've had no pain with them, just discomfort. Trigger finger comes and goes, attacking random fingers. Although the severity changes, they are overall getting worse with more days stiff than not.

I'm 22 now and I fear for my future. The doctor made it seem like he didn't really want me back if the results were negative and yet won't look at other options or other potential diagnosis. He told me that it couldn't really be anything other the RA but from what I understand of RA, the sooner you get treated, the less damage is done so why tell me there's nothing they can do? But then again, I also told him that my scalp had some sort of condition and he told me he couldn't see anything. This is despite the fact I'm getting clumps of skins falling from it and it's so itchy I've repeatedly caused it to bleed. I've lived with the symptoms for 3 years, so a diagnosis of RA or anything else wouldn't be groundbreaking but it will allow for treatment. I've worked to be an animal physiotherapist for a very long time.

I was about 13 when I decided I wanted to be one and I haven't changed since. Now I'm worried that that's not going to be possible. Yesterday I lunged two horses (round in a circle at the end of rope) and the pressure from keeping the rope taunt enough to maintain communication down it was enough to badly seize my right hand this morning. I don't know what else to do. I don't want to give them up for banjaxed but I don't know when or if my own GP will return. There's another doctor in the building but he just told me it was muscle tension around my elbow and not to worry about it, before changing his mind and then telling me it was tonsillitis :rolleyes:. It seems I just keep hitting a wall with it.

huskerdu

I dont want to give medical advice, I strongly believe that the boards charter is correct.

However, have you heard of psoriatic arthritis. The symptoms are similar and the blood tests for RA are negative with PsA.

I do think you need a new GP.

0lddog

It sounds like you have an issue for a rheumatologist.

I'm surprised your GP has not referred you to one.

If s/he wont then I'd agree with Huskerdu WRT present GP

Ave Sodalis

huskerdu wrote:

However, have you heard of psoriatic arthritis. The symptoms are similar and the blood tests for RA are negative with PsA.

I've heard of it but I don't really have any other symptoms.

0lddog wrote:

It sounds like you have an issue for a rheumatologist.

Do I need a referral? The doctor talked about it but it said it would be a waste of time because they just run the same blood tests.

My own GP is very good, which is the annoying thing. It's her replacement I've been working with for the last while. Although even when she is working, you have to book her weeks in advance because she's well known to be good.

Gatling

sup_dude wrote: »

I've heard of it but I don't really have any other symptoms.




Do I need a referral? The doctor talked about it but it said it would be a waste of time because they just run the same blood tests.

My own GP is very good, which is the annoying thing. It's her replacement I've been working with for the last while. Although even when she is working, you have to book her weeks in advance because she's well known to be good.

You won't get an appointment without a referral for public patients and depending where you are based you could be waiting a anything up to several years to get an appointment,
Id be looking at alternative therapies to help with the symptoms and physio if you can afford it ,

I've been through the whole nine yards for a diagnosis

*eadaoin

I would insist on a referral to a rheumatologist. Your GP isn't qualified to rule out a diagnosis like this. There is a type of RA called seronegative where there are no positive, or low positive, blood tests. There's also PsA as the others have advised you on. Only a rheumatologist is able to make a diagnosis like this. They will do more bloods, take x-rays, review your medical and family history, and any other necessary tests to rule out or make a diagnosis.

I don't have health insurance, but I asked to be referred to a private rheumatologist because I was in so much pain and aware of how fast treatment is necessary. My diagnosis was much faster than yours because I had positive bloods, but rheumatoid disease should not be ruled out by your GP just because of no positive bloods. It was expensive to do it privately, but worth it because with medication I was doing a whole lot better in a few months.

Ave Sodalis

*eadaoin wrote: »

It was expensive to do it privately, but worth it because with medication I was doing a whole lot better in a few months.

If you don't mind me asking, how much was it (ballpark figure) from when you started until when you got treatment?

*eadaoin

sup_dude wrote: »

If you don't mind me asking, how much was it (ballpark figure) from when you started until when you got treatment?

To cut a long story short, I probably had RA for many years but the symptoms were so random and disappeared quickly that I never thought to have it fully investigated. A few years ago my whole body blew up in one giant flare, at that point it was clear something was wrong.

I went to my GP because my hands and feet were incredibly painful and stiff, and getting worse. I had no family history of RA, but she took bloods to test for inflammation anyway. They came back with low positive scores, so she referred me to a rheumatologist. We decided to do it privately as I was in a lot of pain and didn't want to wait for a public appointment.

GP cost was roughly €80 for appointment and bloods

Rheumatologist first appointment was €200 (I think), and €130 for every appointment after. I saw her again after three months, and then every six months for a few years until I started to go downhill and needed a medication change.

I was given a positive RA diagnosis based on medical history, symptoms and blood test results. She ordered further blood tests to confirm, I had those done through my GP. The rheumatologist gave me a prescription straight away in that first appointment, and it has changed depending on how active the disease was.

I went for blood tests every month for a while, and every three months afterwards. Now with a medication change I need to go every month for a few months, and after it will be every two months. These blood tests cost €40 from my GP without a consultation. You can usually get them done for free in your local hospital, but my only experience with this was that my test results got lost for a long time and had to be repeated, so I don't bother with that anymore.

So I was diagnosed quickly, which was lucky. But I spent a fortune with a podiatrist and on ECCO shoes to help with the foot pain first. It was worth paying to see the rheumatologist privately and be seen quickly.

If you are seronegative it can take a lot longer to get a diagnosis. In the public system it can take a long time and it's a lucky dip on whether your medical team will be knowledgeable enough about seronegative RA (I have a friend with this and it took ridiculously long time for her to be diagnosed).

I wish to god they'd put this disease on the medical card list, it's costly as hell. If you want to know the name of my GP or rheumatologist I can PM you.

Ave Sodalis

*eadaoin wrote:

I wish to god they'd put this disease on the medical card list, it's costly as hell. If you want to know the name of my GP or rheumatologist I can PM you.

Thanks for your detailed post! I might just make an appointment specifically to get a rheumatologist appointment and see how it goes. It does seem very expensive alright...

0lddog

Thats a great post there, *eadaoin

Clear and informative.