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Date: 24.10.2010
From: katknapp

Subject: provisional diagnosis of spondyloarthritis

Hi all,
i recieved a letter from my consultant yesterday(the ones they send to your gp) and in it he's said that hes making a provisional diagnosis of imflammatory spondyloarthritis also can be known as seronegative arthritis? has anyone else got this?
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Date: 24.10.2010
From: caroline

Subject: Re: provisional diagnosis of spondyloarthritis

I have sero neg imflammatory arthritis i got diagnosed in september 2010 so im newly diagnosed still struggling to get my head round it I was put on sulfalazine and amitriptyline at my first visit to the consultant I guess im still in denial with the disease at the min. Still dont believe it its taken me a few years to get diagnosed with it.
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Date: 24.10.2010
From: katknapp

Subject: Re: provisional diagnosis of spondyloarthritis

i have also been put on sulfalazine and im on steroids too,i havent been told what sero neg,i feel annoyed that i just got this letter which was addressed to my gp,i would rather have been told what his findings were and what to expect face to face instead of having to try and find out for myself,it is very scary isnt it?x
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Date: 24.10.2010
From: caroline

Subject: Re: provisional diagnosis of spondyloarthritis

It sure is hun my consultant was to busy trying to get rid of me wrote the prescription out and told me come back see the nurse next week when tried to ask questions he told me it wasnt the right time. when i asked for pain relief the nurse told me had to given the sulfalazine a chance to work :( i now just go with the flow as i dont know what to expect or do
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Date: 24.10.2010
From: katknapp

Subject: Re: provisional diagnosis of spondyloarthritis

Thats exactly what happened to me,he didnt look at me just was busy writting out a precription and shoved me a leaflet on sulfalazine,i was so down the next day i always am when ive seen a doctor,all you want is for someone to sit you down and be honest and blunt..this is what you've got,this is what to expect and this is what we can do for you..simple lol
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Date: 24.10.2010
From: caroline

Subject: Re: provisional diagnosis of spondyloarthritis

Very true hun! thats exactly how mine was its probably the same consultant lol Wish he had the time answer my questions the nurse is the same doesnt have time for me just checks my bloods and sends me on my way!! so unfair
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Date: 24.10.2010
From: Lynn B

Subject: Re: provisional diagnosis of spondyloarthritis

Girls dont let them treat you like this... You have to be rude and stay put in the chair, and tell them you are not moving until they explain to you properly what you have,what your prognosis is,how bad are you going to get, How the meds are going to help you, And YOU NEED AND HAVE EVERY RIGHT TO PROPER PAIN RELIEVE. Sorry for shouting "got on my soap box there". But they are supposed to help us, that is what they get paid for. In an ideal world they would be out of a job because we wouldnt have this insideouse disease. Please dont let Doctors treat you like that. We all have a right to be treated desently (soz spelling). Any way sorry for rambling hope you are all enjoying this beautiful sunny sunday, take care everyone xx
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Date: 24.10.2010
From: caroline

Subject: Re: provisional diagnosis of spondyloarthritis

Thanks lynn B I dont see my consultant until january i have asked the nurse if im taking the tablets unnecassary as feels like some sort of joke at times. i dont feel any difference taking the sulafasaline and the amitriptyline makes me feel very tired unless thats the Arthritis.
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Date: 24.10.2010
From: Lynn B

Subject: Re: provisional diagnosis of spondyloarthritis

Caroline the amitriptyline can make you feel tired, but the arthritis can realy drain you , because of all the inflamation. I think maybe when you find a med that works for you (wich can take some time) you will start to feel better, But the tiredness and fatigue does go hand in hand with the arther. T.C.X
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Date: 25.10.2010
From: katknapp

Subject: Re: provisional diagnosis of spondyloarthritis

its making me very tired too,does it also make you tembly?i cant explain it..when i go out i just feel so shaky and clumsy i just want get back home as quick as possible,ive tried telling the doctors but i dont think they believe me,x
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Date: 25.10.2010
From: Lynn B

Subject: Re: provisional diagnosis of spondyloarthritis

Yes It can make you feel like that,How long have you been on sulfa? have you only just started it, or have you been on it for a while. Katnap dont worry It may well settle down soon. If It doesnt then keep on at your doctor till he listens properly.T.C. x
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Date: 25.10.2010
From: caroline

Subject: Re: provisional diagnosis of spondyloarthritis

thanks lynn b. I go back tomorrow to see my nurse my esr and crp levels are more or less normal so i guess the tablets are working for my but i have lots of water retention in my hands and feet and i still feel in a lot of pain. Tiredness aint the word im so washed out getting through the day at work is a killer I dont think i want to grow old like this is scares me rotten let alone then thought of my kids watching me isnt good at all:(
Yes katknapp i did have the trembles when i first start taking my meds its scary isnt it they dont tell ya whats normal and what isnt
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Date: 29.10.2010
From: Kylie

Subject: Re: provisional diagnosis of spondyloarthritis

Hi there katknapp I hope you are still following this thread. I'm 18 and from Australia and I too have seronegative arthritis I was diagnosed 'officially' in February this year but the symptoms started around this time last year. My Rheumatogoist still doesn't know what strand of seronegative arthritis I have and at this point in time I am ok with that. When I first saw the Rheumatologist they put me on prednisone (steriod) which didn't help me at all, it actually made me worse, at my next appointment they prescribed me sulphasalazine and I have been taking it ever since. I believe it took the sulphasalazine about 3 months to get into my system and start working. If you are at this stage then hang in there because it has worked for me and I haven't had a flare up since. If you have any other questions then please feel free to ask, I am only a post away. Hang in there :)
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Date: 29.10.2010
From: kylee

Subject: Re: provisional diagnosis of spondyloarthritis

hi i have had sero negative arthritis for 4 years basicaly its arthritis with out the rhumtoyed factor so it doesnt show in the blood test my arthritis stil isnt under control and i am now on anti tnf injections as i have realy bad flares 3-4 times aweek my worst flare was a few weeks ago i had it in my knee hip sholder and jaw all at the same time very very painful i had the fluid taken out to relief some of the pain. i always think i dnt have artritis and that i have something else i also ask my rhummy if he is sure its arthritis think he getting fed up now when i ask him lol
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