Hello :) ...frustrated newbie

floridakat

Hello

I am 41 and was diagnosed with 'Seronegative Arthritis' in February. I now realise, after reading the factsheets, that this is a generic term at the very least!!

The flare up happened almost overnight - I had had some swelling whilst on holiday and put this down to the lack of leg room on the flight. About a week after we came back my ankles swelled up noticeably and I went to the GP. He was a trainee and said he'd never seen anything like it and I had blood taken and was told to call back in a week.

I did this and was told 'tests are normal, you're healthy, no further action'. My feet and ankles were still swollen!

By the Friday of that week the swelling was very red and angry and after my cousin saw a picture (on FB as you do!!) she said she was concerned it could be celluitis and to call the doctor straight away. The GP asked to see me immediately and he said that he knew it wasn't that but it was either gout or something arthritic.

I had more blood taken on the Monday. The GP called on the Tuesday to say it was Seronegative Arthritis and prescribed steroids, codeine phosphate and naproxen. By this point to walk was horrifically painful and remember crying so much because the pain was so bad.

The steroids worked to reduce the swelling and I had got an appointment to see the rhematology consultant which I went to yesterday.

I feel I wasn't believed and it was a complete waste of over 2 hours of my time. He barely asked any questions, despite me telling him none of my other joints were affected he put me on the exam table and moved all my joints to check for pain. He then declared 'I think you have had an infection that caused the swelling and I know that your blood tests will come back normal. I'm not going to do any treatment so make an appointment for 6 months time but if there is any swelling between now and then call my secretary'.

Really???? Shall I call your secretary each evening when the swelling occurs (maybe you didn't hear that bit because you were so busy doodling!)

I appreciate that I probably don't fit into any 'normal' category - I don't feel the pain is horrific (I know I have a high pain threshold so a 2 for me could be a 5 for someone else!), I don't let it stop me doing the stuff I normally do but my back still aches, my ankles are 'uncomfortable' (this is noticeable) and I have to sit down more than I ever did, I have to take pain killers more regular than I have ever done, the ankles both swell most evenings but particularly when I have been very active (bizarrely ironing seems to have the worst impact!!) and I seem to get tired so easily.

I feel quite angry at the seeming lack of belief from the consultant.

Anyway, I read one of the 'fact sheets' on here this morning and it was like someone had taken my symptoms and written them down! Additionally my mother has recently been diagnosed with collitis and has a form of arthritis in her hands - the hospital refused to do a test for HLA-B27 when my GP requested it (because of the cost) saying it wouldn't affect my treatment....so I'm wondering if I should be pushing for this test again and would it help with a specific diagnosis?

I've dug out a book to keep a diary of symptoms, pain killers I take etc but wondered if anyone else had experienced anything similar and if so any advice re helping to get a specific diagnosis, help with consultant actually believing there is an issue (can I ask for a 2nd opinion?)

Many thanks for taking the time to read my (very long!) post and I appreciate any advice you may have to offer.

Thanks
Kate x

Sarah01

Hi Kate,

Welcome to the forum

I'm afraid I have never heard of Seronegative Arthritis (I have osteoarthritis), I am sorry to hear that you were diagnosed with it.

Having read your post I really feel for you and the problems you encountered with your GP and the consultant. I can understand your frustration with them. You are well within your rights to ask for a 2nd opinion.

I wish you all the best and hope to see you around on the forum. It would be nice to know how you get on if you ask for a 2nd opinion.

Take care
Sarah x

dreamdaisy

Oh boy, this takes me back. It took five years for someone to react to my ever-increasing left knee and I lost a one of those years being bounced between rheumatology and orthopaedics. After some time I was given the umbrella title of 'an auto-immune inflammatory arthritis' and, as it turned out, I do have a sero-negative form, psoriatic. This was not confirmed, however, until my skin helpfully obliged nine years in with a bout of pustular psoriasis on my palms and soles.

There are around 200 kinds of auto-immune arthritis, it is not a matter of there's osteo and rheumatoid., end of. Rheumatoid itself can be either sero-positive (rheumatoid factor shows in the blood) or negative (it doesn't) or it could be something else. Diagnosis is very much a matter of trial and error and it can take time. At least they have acknowledged that there is something amiss (the first rheumatologist I saw dismissed me - I've proved him wrong!) and as a result of my late starts on the meds I have gone on to develop OA in a number of useful joints, plus something called fibromyalgia. There is a history of auto-immune troubles in both sides of my family, my Ma's specialised in asthma and eczema whereas Pa gifted psoriasis.

It's good you have an anti-inflammatory plus stomach protector; the steroids should remove most of the discomfort but they do not tackle the root cause of the disease. They may stabilise things but it doesn't mean that things are better - I think you should seek a second opinion (I made huge mistakes in my early days believing doctors because up until then they had been right with everything else that had gone on with me since childhood) but now I know better. Please post again on the Living with Arthritis board on here because more people hang out there and you may gain more replies. I wish you well. DD

Boomer13

Hi Kate;

DD has given you some good information here.

dreamdaisy wrote:

They may stabilise things but it doesn't mean that things are better - I think you should seek a second opinion (I made huge mistakes in my early days believing doctors because up until then they had been right with everything else that had gone on with me since childhood) but now I know better.

I certainly understand your frustration and sadly, you are not alone in what you've experienced. The seronegative inflammatory arthritides can be hard to diagnose (and equally hard to live with ) and it seems some docs don't have much knowledge of them, as you have discovered.

I have psoriatic arthritis/spondylitis and it took eight painful years to have it diagnosed but I have a very knowledgeable rheumatologist now so am finally on the right track for treatment. I am positive for HLA B27 but it really is an inconclusive test because it doesn't tell the docs if you have a seronegative disease, only that you have that tissue type and genetics. Many people who are positive (except AS sufferers) may never develop illness of these types and some have these illnesses but not the genetic type HLA B27. I was tested specifically because of back pain and a kyphotic upper spine hump but it has affected my treatment at all. I believe 99% of AS sufferers are positive but only ~65% of PsA suffers are, so it can provide a clue for docs but that's all. If you are negative, it doesn't mean you don't have a seronegative arthritis. Confusing, I know.

I would say that you owe it to yourself to keep pestering the docs, seeking second opinions, and don't be lulled into "wait and see" mode endlessly. You will find a doctor that takes you seriously and looks for the correct medical answer.

Best wishes,
Anna

barbara12

Hello Kate and welcome
There are many people on here that have had to fight to get a diagnosis...including me 4years on..you really have to do your homework and the diary is a good idea , I keep one and take it with me to clinics..not that they always read it ..but \\\\\\\\\i take a shortened version and make them read it...I do hope to see more of you around the forum..