was it a wrong diagnosis ? dont know what to feel.

[ohbother69uk]

Went to the consultants monday i dont know what to think..! When i first went she took one look at my swollen hand asked me lots of question history of pain and symptoms ect examined me and stated me on mtx straightaway my das score was 5.46 i had hand and foot xrays , The mtx didnt suit me it made me very sick and 5 weeks later they took me of it and sent me for a hand scan , when i went to see the consultant monday she seemed very abrupt she told me their was no sign of inflamation and that she was not going to try any other medication however i went in their with a very swollen finger and still in a awful ammount of pain .!

She re examined me and has now told me i have fibromyalgia is this just a second guess? can i really trust her judgment! Should they have really put me on mtx such a potent drug if she hadnt been sure it was RA .

My pain hasnt changed but my mood definatly has i feel so utterly let down .!

Anyone had any similar experiences ? what should i do next?

sharon...x

[laney84]

hi sharon,

i would go back to your gp and tell her about the situation and ask to be refered to a different rheumy elsewhere----if i could turn back time this is what i should have done as my first bad rheumy stalled alot of things and i was not happy with her treatment of me. and its always good to have a second opinion, maybe the 5 weeks of mtx had started to work and the swelling went down, maybe your flare subsided, only to com back again at any time...sometimes these nurses/docs are so quick to judge and dont look at the full picture, i hope you get it sorted soon xxx

[sylvi]

Fibro moves around the body and sometimes you don't feel it all. As been said before get a second opinion. You can have both ra and fibro as i do have both. Keep pressing for a diagnosis you will get there in the end. Best of luck. Sylvi.x

[Philip]

Can I just say that fibromyalgia does not cause swelling.

Maybe another trip to the docs to ask a few questions your self, these doctors sometimes cause that many problems everyone get confused I had terrible trouble getting a diagnosis as I have had Fibro for over twenty years or maybe a lot more, I wish you best of luck with hour doctors and I hope you get your diagnosis of whatever it may be, then you will get some piece of mind

Philip

[Gina_K]

Can I just ask, does fibro cause joint damage?

Gina.

[Hidden in reply to Gina_K]

No, it doesn't - the level of pain without observable joint swelling and damage is one of the diagnostic criteria.

Cece x

[Hidden in reply to Gina_K]

NO! Fibromyalgia affects the muscles and tendons, there is no swelling, no signs of inflammation, so nothing shows on xrays.

A swollen finger is, quite obviously, inflammed! Inflammation of soft tissue does not show up on xray, long-term inflammation in a joint will show on xray. That finger swelling must be evaluated instantly!

Some doctors tend to use the explanation of Fibromyalgia too hastily, in an effort to give the patient a diagnosis. There are drugs specifically for Fibro, so I'm wondering why she didn't perscribe one if that was an educated diagnosis.

Think you need to go back to the GP and insist on diagnosing the finger and ask for meds to treat it, and relieve pain. It is unfortunate you need to "coach " your doctors. All the best, Loret

ps: I have a hunch..Is there any history of Psoriasis in your family.? Even if not, you might ask the Rheumatologist if this could be a sign of Psoriatic Arthritis? My sister was diagnosed because her fingers all looked like puffy sausages.

[Hidden]

I would query how you could have that DAS score - visibly hot and swollen joints - and then have the diagnosis changed?

It sounds like a second opinion is called for and you're entitled to a referral for that purpose. First stop should be your GP though as he/she might have more information about how this diagnosis has been reached.

Many of us have had misdiagnoses on the journey to getting diagnosed and treated - so don't lose hope, you're not alone with this.

Cece x

[ohbother69uk]

i have been to my gp today she told me to just keep an eye out for the swellings and she is waiting for the ltter from the consultant , how do i get a 2nd opinion ?

[helixhelix in reply to ohbother69uk]

you ask your GP to refer you to someone else. Px

[Hidden]

Yes I agree with everyone this is a shocking story - really rotten for you I'm so sorry that you've had to go through all this it would have traumatised me too. Swelling that is visible means inflammatory arthritis surely not fibro or OA? Although my rheumy said "inconclusive" the first time i saw him, four months later he just went by my symptoms and visible swelling in hands and said "Sero Negative RA ... bloods and x-rays don't tell the whole story". From the way this consultant completely changed their attitude and diagnosis it sounds like they had an agenda and you need to ask your GP what is going on as others have said. Good luck and keep us posted. TildaTx

[Hidden]

what's the difference between cero negative and cero positive, I am positive but have never been told what it means. thanks xx

[Hidden]

The main difference is that sero negative people are far more difficult to diagnose and that means that the disease can progress untreated for longer it seems. Some say that sero negative people have a better longterm prognosis because it is less aggressive but my consultant said that isn't born out by his experience for the first reason I mention - delaying in treatment can cause damage so it is important to push all you can.

Sharon if you haven't already then it would be a good idea to keep a record of your symptoms and photograph any swollen joints - that really helped my rheumy to make a diagnosis and it means you feel more certain in yourself if you happen to be having a good day when you do see another consultant. TTx

[Victoria-NRAS Partner Moderator NRAS]

Hi All

I thought these links might be useful to you. Here is a link to our article (which has just been re-written) on seropositive/seronegative:

nras.org.uk/about_rheumatoi...

I think that sometimes worrying about what this means can just confuse things, as there is not a lot of difference between the 2, but this should at least help to eplain the key difefrences.

Also, in regards to getting a second opinion, there is a useful NHS web page on this:

nhs.uk/chq/Pages/910.aspx?C...

Kind regards

Victoria

NRAS Helpline & Information Coordinator

[Hidden]

I would have thought that high das score of 5.46 cant have magically disappeared?... yes another opinion.. are you on high dose steroids?.. they can mask inflammation in a hand scan? x