Problems getting a diagnosis

GAlvey

Hello

I am trying to get a diagnosis and struggling! I started last June out of nowhere with a swollen, painful knee and was referred to a rheumatologist who thought I might have enteropathic arthritis (related to my ulcerative colitis and other auto-immune things that I have and also family history of rheumatism). He gave me a steriod injection that didn't work really very much and then sent me for an MRI scan that surprised us both by coming back clear. The swelling continued for several months and I did as best I could but then started to get worse and also my other knee started to get sore and swell a little. So I went back to another rheumatologist as the first one had gone on sabbatical. This new one gave me steriod injection, one in either knee and that is when the trouble really started as both knees got worse and remain so. I am now off work and in a lot of pain, still trying to get a diagnosis and not getting any sense. The rheumatologist thinks that because the scan was clear and the streiod injects didn't work and the fact that I only get a little stiff in the mornings (but getting more so as time goes on) that I must have another condition. But intuitively it doesn't make sense. I am back to the GP to ask why no blood tests have been done.

But my big questions are: do all rheumatic conditions show on MRI scans, does enteropathic arthritis always show on a scan and surely not everyone must respond to steriod and has anyone had a steriod injection that has made things worse, continuing worse for a month and a half.

Sorry to go on so but am getting at my wits end: starting to feel that this will never end which is so unusual for me.

stickywicket

Hello G.Alvey and welcome to the forum.

I’m sorry I can’t answer any of your questions except to assure you that not everyone does respond to steroid jabs. I love them but I know they do little for some on here. (I presume you were told to rest the knee for 48 hours after the injections?) However, from the basis of no medical training at all :roll: but 50+ years of RA and OA, I would doubt that the steroids have actually made anything worse.

It does seem logical that, with a family history of arthritis and your own auto-immune illnesses, you would be suffering from some form of auto-immune arthritis. Have no blood tests been done? I’d have thought they’d have done them before an MRI. I’m not sure what an MRI shows other than bone damage. I do know that damage done often bears no relationship to pain undergone.

It must be very distressing for you not to have an official diagnosis. I know a lot of people on here go a long time without one. I hope yours will come soon.

dreamdaisy

Hello, it's nice to meet you and I hope the forum will be able to help with information and support.

There are many varieties of inflammatory arthritis and diagnosis is not necessarily a straightforward matter. I too am surprised that an MRI was the first port-of-call, that just goes to show that every rheumatologist has their own way of going about matters. I think I had my first MRI about five years after my trouble began, it was done before my first open synovectomy and showed very clearly what was going on with my left knee (I won't go into too much detail, suffice it to say that my knee was by then 27" in circumference). I've had two more since then and again joint damage has been visible. Xrays have also shown this. Mind you, I am shortly to embark upon my seventeenth year of this malarkey so that's little wonder.

My problems began in 1997 but it wasn't until 2002 that I began some treatment. I've never responded to steroid injections into the knees (but one into my ankle did give some relief from my osteo-arthritis). I have a sero-negative form of an auto-immune arthritis so bloods weren't that helpful either but they did confirm that my inflammatory markers were high. I think, given the family history, it's time for blood tests - your GP could help on that front if the rheumatologists haven't. I wish you well. DD

Airwave!

Hi GAlvey,
Don't fret about no diagnosis, lots of us haven't or only have a general one some time ago. The last rheummy I spoke to said she thought she knew about 25% of arthers tale the rest was a guess, we have to accept that the rest is between him up there and the deep blue sea, hopefully our children won't have to suffer.

barbara12

Hello GAlvey
And welcome to the forum
Since joining this forum I have realised how complex arthritis is, I have OA so my x rays and MRIs have always shown up the damage.
I have had steroid injections in my knee but they didnt work for me, and didnt make things worse, maybe with you they have inflamed something.
I have also had regular blood test because of raised something or other.
So you go back to your GP and ask for the blood test
Hope you get some help very soon.

GAlvey

Thanks so much sorry for my delay getting back but sitting at computer is not good at moment!!

Well this certainly makes me a bit more upbeat about going to the GP to ask for blood tests and query the whole mri business. When you are not feeling 100% makes being asertive all the more hard work but this really helps.

stickywicket

You are spot on with your last sentence. Somehow all the aches and pains grind away at our self-confidence. Just try to bear that i n mind and over-ride them

frogmorton

Hi Galvey

Welcome to the forums from me too - I am so gald you have found us and that the forums have already helped you to feel empowered to ask for what you need.

I look forward to seeing how you get on

love

Toni xxx

Thelaststarfighter

Hi galvey

My experience is some why like yours,

I hobbled one day into the docs with two swollen ankles a very sore right hip, a sore right shoulder and a right elbow i couldn't straighten.

As I sat in a bit of a mess the doc asked did I have any bowel issues which I did. The doc then the rhumy consultant said they were convinced I had crohns. I had fissures, cramps, diarrhoea and weight loss so I can see why they thought that. :?
The rhumy sent me to get a operation on the fissures then a colonoscopy, followed by and MRI also a hand scan, which guess what? They all came back clear! :roll:

The only thing they had was the bloods taken by the GP on the first day which showed my inflammation markers through the roof.
Eventually after 7 months the rhumy who was very good I must say, diagnosed seronegative arthy.

The rhumy did say like airwave said the ones who get a clear diagnosis on the first go round are very fortunate.

The doc also told me that they will be taking monthly blood tests as part of the sulfasasalinze treatment and that the seronegative diagnosis could change to positive RA.

Has anyone heard that before?

lizzy100

I have U.C and enteropathic arthrtis. its a nightmare getting a diagnosis. and rheummatologists dont see to understand IBD arthritis, its ridiculous. I have just given up with rheummatology and actually gone to my GI consultant about it as they know more. I only had minor swelling, but i could definitely tell there was swelling.

No blood tests and scans don't always show anything with IBD arthritis and this is what noone gets. but if you read the research papers they all say this!. My bloods were always normal, i had an ultrasound of my hands and that was normal too.
I also found steroid injections didnt do anything, but i had the systemic one in your bum. only oral steroids work for me. im on methotrexate now aswell and GI have just increased it for me.

Mine is independant of IBD activity. but affects all the joints in my arms and legs really. but hips worse.
It annoys me that noone understands it, and theres so little research on it, and all arthritisuk seem to research is RA and OA.
Its agony all the time. Its taken me a year to kind of get a diagnosis. my GPs didnt believe me, i was told 'everyone gets joint pain'. the rheummatologist didnt believe me. i literally couldnt walk. still cant walk much really. noone gets it. To be honest what else can it be? joint pain and swelling, in two places, theres not much else. if theres much swelling you could get it drawn off, but i didnt have enough for that. I would say to you take photos of your joint swelling to collect as evidence, then if u see a new specialist you have them. And dont give up or let them doubt yourself. Iv annoyed them all for a year and they finally believe me. Dont know where you live, but theres a really good GI specialist for IBD arthritis in oxford and in london. When i leave uni this year im probably gonna try the london one. PM me if you like.

http://gut.bmj.com/content/42/3/387.full

There are also ECCO guidelines on the treatment of IBD and under the special situations it talks about arthritis.

lizzy100

your only seropositive if your bloods show your rheumatoid factor positive. i believe depending on disease activity one blood test can be more positive then another blood test. If your seroneg though i wouldnt of thought it would suddenly change to being seropos.

dreamdaisy

Hi TLSF (too long to type ) I have heard of a sero-negative then changing to sero-positive but don't get too hung up on having a label. I was classed for years as an inflammatory-arthritic, it was only when my skin obliged with some psoriasis that the diagnosis changed but it altered nothing in terms of treatment.

Monthly bloods are the usual when on sulph - I began with fortnightly and stayed that way for years so you're one up on me already! I tend to forget how strong a med sulph can be, I bruised very badly when I first began it, others get nausea or headaches but these can ease as the body adjusts and if you are able to persevere with the drug. I'm on six per day and have no trouble at all apart from sulph-induced tinnitus but that took years to appear. DD

Maemae

Hi, i also had problems getting a diagnosis back in 2006, when i woke up with excruciating pain and swelling in my ankle for the 1st time, (me thinking;" how could i have broken my foot while sleeping") needless to say i hadn't. Since then the back of both my hands, knees, and ankles have continued to swell and Hurt, different things were suggested e,g Palindromic arthritis, Grout,Inflammatory arthritis( which i now know rheumatoid is one of)and Osteoarthritis.But in 2010 after asking for a 2nd opinion from another rheumatologist and lots more blood tests, they decided it was both osteoarthritis and rheumatoid arthritis, so hang in there i know its hard,i wish you all the best.

GAlvey

THANK YOU. Went to GP and with my new found assetiveness asked for blood tests and am going tomorrow for them. Will continue to pursue and might even asked to go to anorher rheumatologist. Someone mentioned about talking to a GI - good idea. Yes they don't get this inflammatory stuff at all. I have two other related conditions - one PSC and granuloma annulare and feek instinctively that this is another of them.

Sapp50

Hey GAlvey
Welcome to the forum. Glad you were able to assert yourself with the GP, sometimes we just need to find the courage and speak up for ourselves, who feels it knows it!! D o be mindful that steriod injections aren't suitable for everyone and explore your options

stickywicket

Well done on 'finding your assertiveness' I hope it all leads somewhere positive.

GAlvey

One other question: my swelling is painful, quite extensive but not "warm" which was another reason why they are doubting the diagnosis. Is everyone's swelling "warm"???

dreamdaisy

Mine was, my knees etc were hot to the touch. The meds now control that. My OA pain feels 'hot' but the affected joints are cool to the touch. DD