where can i find speialist in seronegative??

lizzy100

Hi,
Im wondering if anyone knows where i can find a good specialist in seronegative arthritis/enteropathic. Preferably in scotland for now, but anywhere, London maybe?
I got told if the steroids worked it would confirm my diagnosis, which they did. Now got a new doc who said it stil doesnt confirm the diagnosis. grrrr. just no one seems to know about it.

tillytop

Hi Lizzy

So what did the consultant say when you saw him? It doesn't sound like a very satisfactory appointment and I do feel for you. Seronegative does not seem to be uncommon, so I would be surprised if you would find a specialist in that specifically. I am "lucky" in that I am seropositive and showed "classic RA" symptoms from the start (if there is such a thing as "classic RA") so my diagnosis was easy. But I know there are lots of others on here who have spent much time in "limbo" trying to get a confirmed diagnosis and the help that they need because there are so many types of inflammatory arthritis and they seem to be notoriously difficult to diagnose.

Has the new consultant made any suggestions about a diagnosis for you or suggestions about where to go from here?

Thinking of you.

Tilly xxx

dreamdaisy

The specialists in sero-negative are the same ones who treat sero-positive, rheumatologists. One factor we all must take into account is that we are at the mercy of each doctor's opinions. I reckon you could show three rheumatologists the same list of symptoms and get three different diagnoses. Two rheumatologists told me I wasn't in their gang but then one relented and began treating me in 2002 with sulph. I have a sero-negative type, for a long while I was classed as an inflammatory arthritic and treated with meth, lef, etc but once the correct label was tacked on (PsA) that was the only thing that changed. Did this new doc make any suggestions as to what it could be? DD

salamander

Seronegative is always a difficult one. As DD says, same doctors treat both. I was diagnosed Seroneg then the diagnosis changed to RA, even RF missing. A lot of it is about what happens over a period of time. If they don't think you've got arthritis, what do they think you have?

stickywicket

I agree with the others in that the only specialists I know are rheumatologists. I don't think there's a subdivision.

I guess steroids might ease other stuff as well as auto-immune arthritis. Did the rheumatologist say what he thought you might have? What meds have been prescribed?

emsjane

Hi Lizzy,

I have seronegative arthritis too and yes you just need to see a good Rheumatologist who will treat you with respect and listen to your symptoms and try different drugs to see what helps you.

I have Erosive OA in my hands and thats probably the same in my hips. But when i had an ultrasound in my feet they found inflammation so i am now being given Methotrexate and Hydroxychloroquine to see if either of them work for me. I have lots of arthritis all over my body in lots of joints, hence why i was given the label of Seronegative. I dont test positive to RA. But there are lots of different types of arthritis so it is important for the docs to keep trying things with you and not give up!!

What joints are affected with you? Do you get inflammation?

lizzy100

Yea I know all rheummatologists will say they do it, but I need someone who knows about enteropathic arthritis which none of them here do. Theres someone private in london that supposedly specialises in seroneg but I dont know how else i find someone.

all my joints in arms legs, hands, feet are affected. My rheummatologist had said if the steroids worked it would prove it was inflammatory and confirm the diagnosis. then he left and i had to see someone new, and although the steroids worked he still wont give me a diagnosis, and said steroids can work for anything it doesnt prove anything He said he cant diagnose it clinically (which all the journals say you often can't) and so he wont give m a diagnosis. I know he thinks its all in my head and I keep getting tested for fibromyalgia and things. err hello its not muscular, its in all my joints!! he was really rude, out of the door before i could ask any questions. wouldnt sit down, holding the door open. really offish. didnt want to know. said i should try not taking steroids and im like but i cant walk!! iv waited over 7 months for a diagnosis.
I get minor joint swelling not nothing major, mostly pain.

stickywicket

lizzy100 wrote:

said i should try not taking steroids and im like but i cant walk!! iv waited over 7 months for a diagnosis.
I get minor joint swelling not nothing major, mostly pain.

I can feel your frustration, Lizzy100, and I know lots of sero-neg people wait ages for a proper diagnosis. That's no help to each individual waiting in pain but, alas, it's just how it is until or unless the body comes up with something that helps.

Mine's RA but I certainly got joint swelling right from the start. Are you saying you're struggling to walk even with steroids? If so, and if you've only had this for 7 months, I'd say the steroids aren't helping much.

It must be incredibly scary to feel you are not being treated. What meds have been prescribed and by whom (GP or rheumatologist)? What other things have they tested for besides fibro? I'm sorry this is such a tough time for you and I hope you can get some answers soon.

lizzy100

no, the steroids helped loads, i was pretty much 100% with the steroids I could walk, go swimming do anything. well they did an xray of my hips the other day, but im not expecting that to show anything. just bloods. But with enteropathic arthritis and alk spondy bloods can often be normal early on in the disease and often there isnt anything clinical to see. thats what this new doc just doesnt get. its a diagnosis of exclusion. but with the steroids i noticed my hands especially werent as swollen as they are off steroids.

tillytop

Hello again Lizzie100

Your frustration is understandable and I do feel for you. I have had my fair share of feeling I am "not getting through" to the docs over the years and I know that the feeling of not being believed can be very stressful.

BUT (and I know it will be hard for you to find anything positive in this at the moment) I see from your latest thread that you have been prescribed methotrexate. Although you had to push to get it, I don't believe that any amount of pushing on your part would have made the rheumatologist prescribe such a powerful drug if he genuinely didn't believe there was anything going on. And, although you are still no further forward in terms of a diagnosis Lizzie, meth is widely used for inflammatory arthritis, so hopefully you can take some comfort from the fact that, whatever the final diagnosis, you would probably be taking meth anyway if that makes sense. I really do hope it works for you Lizzie.

Thinking of you.

Tilly xxx

Nicchick

I have arthritis all over and it can vary from day to day - I also feel great on steroids but can't have them very often as it can bring out Psoriasis and as they only mask the problem not actually do any good I'm quite pleased about that. My father took steroids for lung problems in the eighties and has a whole load of problems due to long term usage.

I can understand your frustration as I have been in so much pain for years and yet only now that I use a stick have people noticed that I am in pain - most assume that I have had an accident! People don't understand until they have some problems themselves - I had a lady come back to the shop following a spell of sciatica and she came to tell me that she now has a little more understanding about the problems I have. I thought it was very brave of her to mention it as most of the time people try to pretend that it's not happening or go the other way and try to pull me about 'helping' me.

I would have thought that the fact that you do so well on steroids and yet go back to being unable to walk was a pretty good indication that you aren't making it up. I still remember the day my GP phoned me to tell me that she suspected RA and was referring me after she received the message I left telling her that I went from cripple to sprinting up the stairs - I was chuffed and then she gently told me what it pointed to, my ex-boyfriend and his mother were with me and whilst he didn't really understand she was excellent and a great support - my folks were living abroad at the time - I didn't tell them that I was ill until they came home.

I wish you well and hope that you get some treatment soon and not just steroids - you need good anti-inflammatories to get the joint swelling down.

Nic x

salamander

Hi Lizzy,

I didn't realise you'd been prescribed Mtx. Tilly is right, they wouldn't prescribe it unless they thought you have inflammatory arthritis. My consultant waited six months to start me on it as he wanted to make sure it wasn't reactive arthritis. I was on steroids for some of that period and, although they helped, I still had swelling and joint pain.

I had bad swelling and very severe joint pain right from the beginning and was admitted to hospital for 10 days from the outpatient's clinic because I couldn't move. My joints were drained of fluid in the clinic they were so bad. It was really obvious I had some kind of inflammatory arthritis but didn't test positive for RF so the diagnosis was difficult and slow. I now have diagnosis of RA but that took 18 months or more. I know you are frustrated but 7 months isn't a long time, really, and you are getting treatment which is the main thing.

I did a load of research on sero -ve arthritis at the beginning of my illness and did find it frustrating as the information was vague and sparse. It's part of wanting to make sense of the illness and taking control so understand why you want more information. Things will fall into place eventually so try not to get too fixated on what type of arthritis you have. Best of luck with the mtx!

lizzy100

its not the type of arthritis i have, they wont diagnose arthritis. Well he gave me methotrexate because the first doctor i saw had said he would give it to me, so he coudlnt really go back on what the first doctor had said although he said he was wrong about it confirming the diagnosis., but he doesnt listen to a word i said, wouldnt let me ask any questions, he was really rude.
I know some people wait years for a diagnosis but it is frustrating when i knew what it was in the first place and noone would listen to me or believe me, and i got told it was all in my head, everyone gets joint pains blah blah. its hypermobility etc. He just wanted me out the room as soon as possible, where i felt like i was finally getting somwhere with the last guy. I really dont want to even go back to see him he was so rude. but it seems like there isnt anyone else. i'll be moving away in the summer so I'll be able to find someone else then.
its not just its seronegative, but they just dont seem to know anything about enteropathic arthritis, and it does matter that its that because with that you dont get obvious signs like you do with rheumatoid swellings. which they arent getting.

salamander

Apologies if misunderstood Lizzy but it is all a bit unclear. However, I wish you luck getting a more sympathetic doctor.