SERO=NEGATIVE INFLAMMATORY ARTHRITIS

theresa4

tjt6768 wrote:

Look, I've got a poorly finger!
(don't look if you will be offended by a photo of an old fart giving the finger, lol) you've been warned
http://i1219.photobucket.com/albums/dd427/TJT6768/C360_2011-05-0513-34-36_org.jpg

Lol

Mat48

Hey Tony you look every inch the man I'm getting to know and like - less of the old fart and more of the cheering person who keeps us all smiling!
ps can't make it open - how did you do it Tony?

I've tried to attach an image of my little finger last night for you to keep your company.. it came up like warts - wonder if yours are rheumy nodules perhaps? If it's the top finger joint it's Herbedin nodules (sp) which are associated with OA - I've got them on each finger now which makes me wonder if mine is OA after all?

Theresa - I think anything that brings more uncertainty is bad so from that point we who are sero-neg (or half sero-neg in my case?!) are in a tough place. But people who have aggressive sero positive RA perhaps think that uncertainty is good from where they are sitting as there's always some hope?

Personally I'm a fighter and like to know what I've got. And I agree entirely with you that anyone who gets a diagnosis of RA despite being sero-negative is relatively lucky. I'm hoping like mad for a bit of luck in that regard in a month's time but after the things that have been going on in my life for past few years (sudden deaths of both parents, house leaks, death of close friend's son, car problems, job rejections.. and much else besides) I don't expect anything other than bad luck now. That's why I'll probably get more! For me bad luck would be to remain undiagnosed and untreated.

Mat x

soraya

Hi mat thanks for all your comments on sero neg would be happy if u could send me the pic of your finger as i to have come up with a small lump on my middle finger just like tony, dosent hurt but under the skin been there for about three months now, im sorry about your luck at the moment mines been the same lost the father to my four children this year and then my cat died and one of my dear friends passed away on tuesday so forgive me people if im on a downer with pain added to the recipe,i am very lucky that these cornish doctors are really good and have taken me serious and i wish you all the luck in the world for your next app soraya

Mat48

Oh poor you Soraya that's terrible. I didn't mean to come over as mean and jealous - but just that you are lucky in that you have good doctors and are on the medicines and are being cared for by the Cornish NHS at least. That was what your post was complaining about and just wanted to make you feel better about this and that you are lucky in this one regard. Moan about the rest all you like you certainly have good reason from what you say.

Can't attach image of winky or right forefinger for some reason -whenever I try this reply page disapears and the last one took forever to write! I'm pleased when things swell and show themselves because the worst pain I've had has been in wrists and shoulders to date and nothing shows even though the wrist feels fractured and I can't drive, write with a pen, work do anything when it's like this! Lumps and bumps are like the pain revealing themselves and a relief really!

Starting to wish we'd stayed in Cornwall where we trained as artists and got married 23 years ago! OH spends his life complaining about the weather here in N.Scotland!
Take care and wishing you good luck in everything from now onwards!
Mat xx

tjt6768

Hi Mat... Lol
I had to create a photobucket account, then I just copy the direct code onto here.
There is a way of actually putting the photo on here but mine all seem too large and haven't got the jist of resizing them as yet, the links usually work the, if you click on the link with your right mouse button and open in new window I think it is then you shouldn't lost the page you are on..



Soraya, boy you have been through it eh? I am sorry that you have hun..
I hope things start to get easier for you and things turn around.
I have no idea what this little lump is on mi finger, just appeared, as I said, it doesn't hurt.. I have OA in spine and knees so maybe it's an OA thing, dunno.. Lol

Mat48

Hi Tony. Just don't think my fingers can cope with fiddling around trying to send anything today! :roll:

GP just phoned and I told him that I wasn't coping well and OH disappearing this w/e to collect our exhibition which leaves me alone with 2 boys, a bouncy dog, bad weather probably and a car I'm struggling to drive with fingers, wrists and shoulders this bad.

So he said to come in tomorrow morning instead and the practice nurse will take the inflammatory markers and then I can set to with the steroids which will hopefully reduce the inflammation at least. He said it shouldn't stay in my system for too long and unlikely to mask anything when I see rheumy in a month's time - which is my main concern! He was kind enough to say that he didn't think we should be thinking ahead just try and stop the pain and inflammation I'm experiencing now.

So fingers crossed that ESR and CRP are high enough to at least indicate that I'm not just bad dreaming this. He said R factor probably wouldn't have changed as it stayed on low positive twice earlier in the year so no point in taking that one again as well. Underside of feet are rubbish today too but at least knees, ankles and elbows are behaving this time round I feel so tense all the time just now - like I'm a pain blob waiting to go up in a big flash of fire and smoke - a bad firework! Mat x

tjt6768

Well I hope that you will soon become a happy, shiney sparkler again soon

Best of luck with the doctors appointment mi dear.
And also with coping at the weekend too..
There will always be someone around on here if you need to let off a bit of steam

suzygirl

Mat, taking photos of the joints when hot and swollen helps. My inflammatory markers did nothing much for ages, but I could prove by photos to start with then by them seeing for themselves, what my joints were doing.

I have had appts were every single joint is swollen and inflamed, but bloods ok. Bloods are not the whole story and a good rheumy knows this.

Mat48

Thank-you - I think my GP would agree as he said show the photos. But not sure whether my rheumy is good or not yet to be honest. My GP seems to respect him and I guess he will have a lot more contact with these consultants through his other patients because this is a small place. But rheumy seemed to set a lot of store by bloods. Then again I've only met him once for 30 mins on a good day with v little joint pain and no swelling at all.

Now 4 months on all feels much tighter and pain in a different league almost constantly so hope inflam markers do reflect this but will try not to be too fretful if they don't. My ESR started at 60 and last checked (mid August) was down to 30 which is only very marginally elevated I'm told. Terrified of being abandoned because of blood results to be honest! I know I'm still a month off seeing the guy but heart pounds at the prospect :shock: Mat xx

salamander

Don't worry about blood results. Mine are always ok due to being on steroids but my rheumy knows this. A lot of the diagnosis/treatment goes on how you say you are.

Your gp is right, tackle the pain and inflammation now and explain to your rheumy when you see them. They won't abandon you.

tjt6768

I really hope that you have a good appointment like I did, makes such a difference.
My last one was awful. He didn't listen to anything I said, then told me he didn't think I even had sero negative..
I'd be very happy to stock with this latest chap and the nurse..

It's only very recently that I've had any swelling. My hands are puffing up a little, fingers too. The knees do on and off, never used to..
No redness anywhere though.

Mat48

Yeah me too with the swelling and stiffness. Wouldn't fret so much had rheumy not put such an emphasis on seeing no visible swelling but I was still in aftermath of a big steroid jab then and he did say he realised this.

But he also said he really needed to see me in full flare to diagnose me you see and what are the chances of me getting swelling etc that's sufficiently impressive once every 5 or 6 months during a 30 minute consultation?! Also I feel now as though I'm always in pain so what is a full flare?

But now I've shown some images of my swollen fingers to two friends - one with RA and she did say ouch I can see that!

By the way does anyone else find that if they leave hands hanging by sides while walking or standing or just sitting still or holding something like a phone their hands go really stiff, swollen and sore? I feel I have to keep them moving all the time now or one day they will just lock permanently?! :???:

Tony that last consultation with the rubbish doctor sounds awful but then I thought you saw a much better chap more recently so couldn't you ask to go on his list now?

Mat x

tjt6768

I get real painful and stiff hands if I hold my phone for a long time, which for me is most of the time :shock: I've now figured out a better way to hold the phone, I've put a new rubber cover on it for easier grip and I can just lean it into the palm of my left hand.. It's a touch type and I find that my right hand hurts after typing s while so I keep all te fingers together and just use the tip of the middle finger,.that does help make it easier for me pain wise.
I'm assuming that I will see the same fella next time Mat. I hope so anyways. Lol

I'm beat tonight, won't be a late one for me I don't think. Lol

Mat48

Well I've had a day off the ibuprofen (usually meant to take 3 400mgs per day at mealtimes) and I now can't move, am burning from within - and every pore of me hurts. Took me 7 minutes to get down one flight of stairs for my tea!

My theory is that if I stop them for 24 hours my infam markers might go higher because they are anti-inflams after all? Just asked my pal who's a GP whether my theory is bonkers because if so I'm really finding this unbearable but if it is as i have deduced for the greater good then am prepared to do this awful thing to myself?! She hasn't replied yet but earlier told me to hit the 'roids after blood tests tomorrow and then we can have a grand Saturday night playing on the nintendo wii fit and guzzling Indian takeaway and beer together while OH and sons are away.

Am meant to be at a friend's 60th bash then but I can't think of anything worse even if I could drive there. I feel 70 at least it would be like being in a room full of youngsters even though I'm actually only 48

Yes I'm the same with my new smart phone with dull rubber case now. only prob is when folks call me on the landline and I have to keep swapping hands and plotting how to get rid of them!

Sorry - we've hijacked this post a bit haven't we but it's keeping me sane in pain tonight. You go to bed early Tony - I'm already there ready to be cranked out of bed by OH tomorrow and manhandled to the nurse for bloods! :eek:
Sleep well sweet dreams.
Mat x

valval

when going docs and want her to know how bad i am do not take pain meds for 12 hours so she can see how it is lol not sure if it makes a difference but sure makes me move like old fogy at the age of 50 lol

Mat48

Ha ha Val - I'm not so much fogy as gone stark raving nuts with pain tonight - but my GP friend did reply and say there is some logic to this theory so I'm going for the whisky tonight big time!
Mat x