Where do we go from here....

rachelj

Morning all,

I haven't been around much as I have been trying to keep my test results of my mind, today I letter lands on my doorstep. Yippee I think, its my appointment to go back to the rheumatoloigt to discuss the results of my bone scan and last lot of bloods. No... its a letter saying Good news your bloods and bone scan both cam back with in acceptable levels, hopefully things will now settle down and you will be OK.

I am a bit confused to say the least, my xrays showed inflammation of the joints, and I have had some wonky bloods in the past and I feel worse than when I first went to see the GP in May, yes I have been worse then now when I had a flare up in my wrists, but no where near normal and the pain is still having a huge impact on my life.

I am not sure what to do, go back to see my GP or to see the Rheumatologist? I am only allowed to stay "on the books" for 6 months, and they start the clock from the date I was referred, not when I was seen, so only have 3 months left.

If its not RA, then does anyone know what else it might be with early morning stiffness, joint pain, fatigue and mouth ulcers?

Feeling so confused as I thought I was fortunate enough that they had hit the nail in the head with my diagnosis and now it seems I am back to square one. I know many of you have struggled ot get a diagnosis so thoughts, experiences, and advice would be massively appreciated.

Apparently fit and healthy

Rach!

frogmorton

Hi Rach

straight back to the GP if the time is ticking to ask advice.

Maybe it is sero-neg? that is always possible, but your results all added together are at the very least ambiuous.

Your GP could then ask for an apt with the rhumy to discuss.

This is the time to be strong and a bit pushy too.

Try to enjoy the weekend - you can do nothing now.

Love

Toni xx

c4thyg

There are many types of arthritis, for example, I have psoriatic arthritis which has all the symptoms you mentioned but doesn't show up in blood work. I would suggest that you see your GP again while at the same time pushing to see your rheumy again. In the short term your GP can help manage the pain and the rheumy needs to look into your condition to find a diagnosis.

It's hard in the early days while you are waiting for a diagnosis as no one knows how to proceed with treatment. Once you have a label it does actually get easier to get help but even then it's usually trial and error until you find a treatment that works for you.

I hope you feel better soon and I urge you to at least see your GP again and try to get them on side.

xx

dreamdaisy

I'm with frog on this: sero-negative is a possibility, tho quite what one does about that I don't know. My bloods never showed an RF factor, but my imflammatory markers have both been very, very high in their time and they worked from that. For four years I had no idea what was gong on, and neither did the docs I spoke to, then I knew for five years that it was some form of inflammatory arthritis, and to be truthful being told I had PA made very little difference as the treatment didn't alter. It does help tho, I think to have a specific name, because then at least 'it' has an identity. This is a very frustrating time for you, rachelj, I empathise. Take time out this week-end to re-group, I am sure more people will be along with their thoughts, then it's time to tackle the docs again. Tell them to look on here! DD

valb115

Hi Rachelj

I'm not surprised you feel confused, that's a bizarre response!

I have similar symptoms to you but nothing shows up in my blood at all. My diagnosis is sero negative inflammatory arthritis (sometimes known as sero negative rheumatoid arthritis).

I agree with other posters that you should go back to your GP to discuss this further. It's a sad fact that you may have to be a little pushy. Arm yourself with some knowledge and some factual material. Read up on different types of arthritis on this website and at Arthritis Research UK, take print outs to your GP with any relevant paragraphs highlighted. The more information you have to back yourself up the better!

In the meantime, be kind to yourself and let us know how you get on.
Val x

dorcas

I agree with the others Rachel... go see the doc as soon as you can ..and ask for an appointment with rheummy.. or another opinion!

'acceptabl levels'... what on earth does that mean? acceptable to whom and for what :!:

you know that the x rays showed inflammation... so you have something of an inflammatory nature going on.. so stand your ground on this and be strong (with us behind you of course)

it is good that the bone scan does not show up anything horrendous... no-one would wish that on themselves. but in the early stages of arther ... damage may not have happened yet.. nor do you want it to. The sero-negs do not show in bloods and it can take an age to get a diagnosis. that does not mean you go without treatment or proper pain relief. :!:

I have PA.. same as DD and lots of others here.. and it is one of the many sero-neg arthers. I was still treated in the early stages conservatively but continuously with anti inflams and pain meds.... before they were able to reach the diagnosis from the changes on xrays done over time ( a year) which showed the tell tale joint damage specific to PA.

the letter did not say you didn't have inflammatory arther.... just that the bone scan etc were acceptable.... so don't go thinking you shouldn't pursue this....see your doc first and listen to what he has to say and insist on follow up.

Iris xxxx

skezier

Hi Rach,

Just dropped in to say i totally agree with the others, you must go back to the gp and push this one. You need answers but you also need treatment for the inflammation. I really hope the gp will help. Cris x

frogmorton

the letter did not say you didn't have inflammatory arther.... just that the bone scan etc were acceptable.... so don't go thinking you shouldn't pursue this....see your doc first and listen to what he has to say and insist on follow up.

Iris xxxx[/quote]

Nicely put Iris!

Be brave Rach - see the GP and dont go alone.

All should yet be well

Love

Toni xx

rachelj

Thanks all, the GP sent me to the rheumatolist with suspected sero negative arthritis/ early onset of RA, as it was the only explanation he could find for my symptoms. The "wonky" Bloods I had showed a low Rheumatoid factor, something that had never been there before, I had have blood tests for something else a few months prior so GP knew this was a change, low red blood cell count and a change on white blood cells. None of the changes fell outside the recommended levels but were all higher or earlier than previous, so i can only assume thats what the consultant means, although I don;t feel I should have to presume, it should be explained.

I think the thing that worries me the worse is the research that shows catching these things early is critical to effective management. I will phone the GP on Monday morning and try and get an appointment.

Rach

frogmorton

That's right Rach - the sooner the better.

Remember what was on the scan picture - inflamation - that and the bloods at least warrant monitoring.

Love

Toni xx

marion1952

Hello Rachel

Just wanted to echo what the other peeps have said - go back to your GP and say it's not settling - in fact it's going worse..

Keep a note of your symptoms to show the GP (and the rheumy).

Let us know how you get on..

Take care

Marion x

airwave

Yep, join the rest of us, like a ping pong ball, batted between hosp and surgery with no one giving you an answer you desperately seek!

Try and live your life without waiting for results, they'll catch up with you one day and for the meantime, just try and smile.

8)Its a grin, honest!

bailey27

Hi
I am similar to you. ALl my bloods have been within normal levels The first few blood tests I had I had low something so they put me on iron tablets. Went ot the GP recently as my hands had swollen up, could barly make a fist, I had 7 mouth ulcers... some of which are still there after 3 weeks. Straight away he said for me to get bloods done. Phoned up for results and they were all normal and no raised inflammatory markers. I have never nce had raised inflammation in blood tests but have clearly got inflammation in the joints as it is visible. So I never go by blood tests 100%. I had one blood test about 8 weeks following surgery. I still have swelling around leg and bones havent heared yet but still no inflammation i the blood work.
MY rheumatologist says it is some kind of inflammatory arthritis. He said all inflammtory arhtirits is treated in pretty much similar ways and so the name given to it doesnt matter (lthough I would like to know what is going on).
RA Runs through my family and so the symptoms and problems I have were detected straight away. My blood didnt show RF so I suppose it isnt rheumatoid. So baffling isnt it.

rachelj

Oh Bailey, we are in a pickle aren't we. My GP is on holiday this week, and next available appointment is next month, so I have phoned the Rheumatologists secretary and asked if the consultant would be so kind as to give me a call, I ain't holding my breath though!

Good news though, my new keyboard and mouse have arrived for work so hopefully a few less aches and pains. Who ever said a mouse was ergonomic clearly needs a taster of arthritis.

Rach