today's the day......

[bidzi]

Well its wednesday, and my consultants' secretary promised me an email with my results.......

No, it hasn't arrived yet.

I have just phoned to check if she is going to be sending them to me as promised, but the answer phone took my call......

Big sigh, I really hope she does let me know today, I asked her to either email or phone me today , and its out of my hands so i'm going swimming.

I really hope an email awaits me on my return

This is really getting me down, and thats just trying to get the results, I do know i'm impatient but this i getting rediculous. Let you know what happens later, Brigette

[bradford]

Hope you hear today , its not nice waiting and i like you am impatient . My day tomorrow and i hope i get some answers .

Good luck and keep your chin up .

Julie x

[Hidden]

I hope you enjoy your swim Brigette and get some answers today. I wish the NHS could sort out it's act and do something to make this whole ordeal less stressful. Good luck and best wishes x x

Julie, best of luck to you too for tomorrow. Please let us know how it goes x x

Paula x

[bidzi]

Well after yet another call to the hospital, I have been told a letter is in the post!! I asked her to tell me what it says, and the diagnosis is inconclusive! I have raised inflammatory markers but not rheumatoid? Maybe I don't have this after all. The consultant is asking the opthalmologist if I can take drugs with my eye sight deteriorating, and I think he wants to start me on something, but if I dont have RA I don't think I will take these strong drugs, I feel inclined to just carry on as best I can, I think the exercise and a diet adjustment will help and see how I get on. Consultant doesn't want to see me until 31st July.

What do you think? Anyone else had an inconclusive diagnosis, and if so are you taking drugs?

Good Luck Julie, I hope your news is good x

[Hidden]

If there is firm diagnosis of inflammatory arthritis this an umbrella term for all the types of which rheumatoid arthritis is one off?. if you have lots of pain and loss of mobility you would probably benefit from some drug use.. they seem to be favouring hydroxychloroquine for you but this is the one drug that can affect eye sight and requires regular eye checksx

[bidzi]

Thanks Summer, I am not clear on what all this means, I have got reduced mobility and aches and pains, stiffness etc, my worst affected area is my feet and the steroid injection certainly helped that, I guess I will just have to wait and see what he says. Not sure what the difference is between the two then. I was feeling relieved but maybe that was premature of me x

[Hidden]

Sorry you didn't get the answers you hoped for but hopefully when you get the letter things will become clearer. When I first saw the rheumy his initial diagnosis was osteo arthritis with an inflammatory element? The last time I saw him he confirmed it is in fact RA. I would not stop taking the meds as they are needeed for inflammatory arthritis. The exercise and diet changes can only help but personally I would stay on medication until you've had you're review in July.

Paula x

[Hidden]

I had an inconclusive diagnosis from my rheumy at first consultation - but he said something was going on from the blood results and symptoms and I had a low positive rheumatoid factor which suggested it might be RA - but not enough to start drug regime. Also I'd had a steroid injection 5 weeks earlier and he said he thought that might still be masking my condition.

He did write to my GP at some length later but it took at least 3 weeks to arrive. Then four months later I presented with much clearer symptoms but a negative anti-CCP which is the more specific test for RA that consultants take so he diagnosed me with sero-negative RA. If your blood tests for Rheumatoid Factor and anti-CCP are both negative then this doesn't necessarily rule out RA but just that it's less clear cut for them to reach a diagnosis. 25-30% of RA sufferers have a sero negative presentation - especially in the early stages of the disease.

So inconclusive might be good and at least it's not ruling anything out or dismissing you from the rheumy list which is the main thing. Hang in there and talk to your GP about Hydroxychoraquine - which as Summer says is one of the main drugs used in the first instance for inflammatory arthritis of many types. It isn't as toxic as the other DMARDs I believe and nor is it as effective for the more aggressive types of inflammatory arthritis - but it can affect your eyes so they have to check you more often. I have been on it for 2 weeks now with Methotrexate and my GP has written to my optician to ask for me to be tested regularly and extensively. I actually suggested this drug was added into the equation because the Methotrexate wasn't working fully and I did my research.

The other drug they might suggest for you is Sulphasalazine which doesn't affect your eyesight like Hydroxy can. I've just had 2 almost completely pain free days so I am thinking my combination of therapies might already be working! Good luck. Tilda Tx

[bidzi]

Thanks again ladies, you obviously have a lot of knowledge on this subject. I don't know what tests they have done and the letter tomorrow should help clarify that at least. I am not on any drugs yet, they gave me a steroid injection about 2 weeks before my tests and that helped, but other than that I don't take anything other than diclofenec if I want to, but I don't take that either. I avoid all drugs if possible, always have.

I will ask for sulphasalazine instead of hydroxy if it comes to that, I will have to wait and see how this progresses.

I get the impression this is a long journey, but being pain free would be great,

talk again soon, I wish you all well, pain free days, Brigette x

[Hidden]

Just a thought Brigette but if the steroids made a difference then that rather confirms the inflammatory nature of your arthritis because if it was simply OA the steroids would make no difference I believe. TTx

[Caza]

Hi there, I'm in a similar position to you. I've been under a consultant since last September. I kept getting painful & swollen joints & flu like symptoms on my first visit he said he thought I had RA & wanted to give me treatment for it straight away. I said I wanted to wait until I'd had all the tests done. So after x-rays scans & loads of blood tests he told me I had OA & RA,he gave me a steroid injection & told me to come back in 6 weeks. The weekend before I saw him was awful I was in terrible terrible pain with flu like symptoms so I was really shocked when he told me he'd had another look at the results & that I defiantly didn't have RA but OA but he prescribed hydroxy which I believe is for RA not OA. So I've been left totally confused & haven't taken the pills yet. This site is great & after reading loads of the letters I think I will start taking the pills but how can I get to the bottom of what I have?

[bidzi]

Hi Caza,

Your situation does sound very similar to mine, and although they haven't diagnosed me with RA, I have symptoms consistent with it, and it seems the steroid working indicates inflammatory arthritis, did your pain go away following your injection?

I have been breathless and dizzy for over a week now, the nurse at the surgery gave me an inhaler, but that has done nothing to help. Going to see the doctor in the morning, I seem to be spending a lot of time at the doctors lately! Don't know if this complaint affects your breathing?

It sounds like your consultant can't make his mind up either, don't they realise it is confusing enough for us, we really need to know what we are dealing with and I have to say, having just done a days work, my feet are killing me as are my joints, so maybe the quicker they give me some meds the better. Brigette

[whitedog]

I was in a similar situation. Could hardly move my fingers, getting out of the bath was a struggle and just walking about was painful.

My first consultation at the hospital proved inconclusive but they wanted to monitor me (it's also an RA research centre) because the blood tests that I'd had done at my GP's surgery showed Rheumatoid Factor though this didn't necessarily mean anything.

When I went back for my second consultation, I didn't necessarily feel any better or worse but the blood tests I'd had done at the hospital on the first visit showed a dramatic change - I think the docs were quite shocked how much. It's funny, I was kind of relieved in a way because I'd been so used to going to doctors with symptoms of things in the past and being told there was little wrong with me. I have a history of depression and everything I complained of was always put down to that. It wasn't until I was diagnosed with Thyroid Disease and then an inflammatory eye disease that they started taking me seriously.

The hospital still have my symptoms down as Inflammatory Arthritis though - not Rheumatoid.

[Hidden]

I don't really understand the difference between inflammatory arthritis and RA to be honest? If it's the autoimmune arthritis ie flu like and systemic and smaller joints are affected and you have some rheumatoid factor then I think it's RA probably and if not then it probably has a different name such as psoriatic arthritis or ankylosing spondilitis or lupus - all of which are just as serious and overlap often. My rheumy said the name we give it isn't important - what matters is how it's treated and told me that for now we would use a working diagnosis of sero neg RA but keep an open mind things could change. Perhaps we overrate the name thing? TTx

[bidzi]

I went to see my GP this morning about my breathing, and he happened to have just received a letter from the consultant. It said that my xray showed osteo arthritis and bone thinning just below my big toe, it also showed osteo in hands. Bloods came back cero? neg but he said I have raised inflammatory markers in my bloods. So he thinks I have osteo and inflammatory arthritis. He also had a letter from hospital in 2006 which was following tests on my back cos I had a lot of back pain then, it showed bone thinning and early signs of OA suggesting a treatment of plaquinil? but nothing was done then. He said the hosp will want to do bone density tests in july, and he also thinks that although the RA test was negative, he thinks my symptoms suggest otherwise.

With regards to my breathing, he sent me this morning for a chest xray and more bloods, he said sometimes this can affect the lungs. He is also giving me an ecg next week and i'm booked to have a BNP blood test on monday which detects heart disease. Think he is finally taking me seriously.

I have been swimming again today and just going to the gym, it helps with stress if nothing else!

Hope you all have a great weekend in spite of the weather which is dull yet again, Brigette x