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Date: 09.07.2012
From: kirst87

Subject: am lost...

ive been on this forum in the past but havnt for some time now. I had a diagnosis of RA and fibromyalgia from a consultant a couple of years ago, he then retired and i got a new consultant who wiped my diagnosis away and wanted to re diagnose.

I only saw that consultant once over the past year (ive complained ect).
I was having regular bloods and eventually the inflamation levels and RF started to level out at an almost normal level. even my GP has started to question wether i have RA or not.

At the moment im getting incredibly sore, swollen and hot hands and fingers, and toes, i feel like ive got no energy what so ever. What im wondering is wether its possible to have a remission of RA, and could that be what has happend to me ?

im waiting for a call back from the rummy nurse as i cannot get an appointment at the GP.

any words of wisdom would be great x
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Date: 09.07.2012
From: Colin W

Subject: Re: am lost...

hi Kirst

is it heat in the joints or hands general + was your RF up a few years ago when they checked ,

one place you could try is National Rheumatoid Arthritis Society, they got a help line , worth a try . http://www.nras.org.uk/
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Date: 09.07.2012
From: kirst87

Subject: Re: am lost...

RF and everything was up a few years ago and stayed like that up untill 9 months ago then my levels became more "normal". heat is in hands in general but is more intense around my joints. will have a look at the site you have suggested, thanks x
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Date: 09.07.2012
From: Sindy

Subject: Re: am lost...

Hello, just wanted to say I know how you feel. I have been struggling to get some sort of diagnosis for years now, doesn't seem like any one takes me seriously, cos they seem to just run the test for RA, & if it comes back negative send me away with pills pills pills and hope I don't come back! Finally been sent for x-rays now, maybe you should see about x-rays or a scan so they can find out what's going on underneath. Best of luck to you, hope you're feeling better soon.
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Date: 10.07.2012
From: willis

Subject: Re: am lost...

hi kirst
were you on medication for the Ra and Fibro? could be it worked some and yes a remission period. just cause bloods 'normal' doesn't mean nothing is happening now, especially given you are in pain.
keep demanding help from doctor and tell him you want to see the specialist again and as colin says get onto the helpline
hope they help soon
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Date: 11.07.2012
From: kirst87

Subject: Re: am lost...

i was on MTX 20mg up untill around this time last year but had to stop it and because bloods were normal they wouldnt put me on anything else if my consultant hadnt retired i was ment to have started sulfasaline (know ive not spelt that right) but the new rummy said no. For the fibro i was on gabapentin but was advised to stop it for a while.

ive rang the helpline again this morning and left another message and have managed to get an appointment to see GP tomorrow morning. Hopefully they will do bloods! Spoke to doc yesterday and have been given tramadol instead of codeine to take and the pain has reduced a little but ive still got sausage hands lol.

ive also just recived a letter with a rummy appointment for 6th august! that will make it almost 15 months since ive seen a consultant! Not happy. altho i have heard good things about this consultant so hopefully everything should get back on track.

Its just so frusterating when all i want is answers and to see someone who knows what they are talking about.
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Date: 11.07.2012
From: Kim

Subject: Re: am lost...

Hi
I have had very similar problems to you and from being on this forum it seems to be a common theme with doctors and consultants having differing opinions about treatment and diagnosis. Push to have scans and xrays done and if you dont get anywhere with consultant go back to your gp and get the to look at all your symptoms from scratch.
I have ra (well according to one doctor!) and sometimes I can have the most horrific pains yet my blood test results are nearly normal so I dont understand how it works.
Good luck and hope you get some answers x
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