Hi I'm new to this site and am from the UK. I tested positive for RA in Jan 07. got an appt. to see a consultant in April after having more blood tests and as far as he's concerned the tests are 'high end of normal' (1point away from being a definite RA diagnosis, he said) so he was sure that I had a virus. Broad spectrum viral blood test showed I have no virus. I was disappointed. Finger/pads and elbows swollen and v. sore, you all know the drill. Latest tests show as normal. A very good friend of mine at work has had RA for 20 years, many operations, very bad hands and he looks at my fingers and swollen knuckles and 'knows'. Why cant the rheumatologist 'know'? I'm very frustrated, angry but am slowly coming to terms with the fact that my 'normal' is changing and I just have to accept it. In the Uk we cannot get referred to some else if we are not happy and we cannot get our GP to give us drugs unless there is an absolute diagnosis. What to do? How long will I have to wait until I can get treatment as opposed to pain relief. Treatment early is meant to be the way to go isnt it?It can be so frustrating around DX time. The problem is that RA is a very individualized disease. Some people show high inflammation rates, some don't. Some show Rheumatoid factor and others don't. And all of us have the same disease.
Take a deep breathe and just attempt to accept that this IS frustrating. That is probably all you can manage for now.
Frustration is a key factor we RA patients learn to deal with.
When I was DXed it took months as I don't show the RA factor. I had to have every test under the sun to prove it was not other things. Meanwhile I am in pain. Here in Australia, they don't give us pain relief. Once disagnosed I then went onto the first drug that took three months to work, still no pain relief. Meanwhile I had a two year old I couldn't pick up or catch and my life was falling apart around me.
DX is not an easy time. Try and be gentle on yourself and the process. Beating your head against it will not make it less frustrating but if you can instead notice little bits of beauty in life around...the frustrating stuff will seem a whole lot easier to manage. RA can be all consuming...I think finding life around it, even if it is only noticing a butterfly or the song of a bird, helps us normalize.
Pincushion is from the UK too. She might know more about your health system over there.
Your normal is changing and that process will take some time to come to terms with, just do little bits at a time if you can.
You're reply and understanding has moved me to tears. I'll keep a look out for pin cushion. New to all this forum language what is DX?
I am due to discuss all this again with my GP at the beginning of August. Any questions I should be asking?
Sarah.
You're not alone in this by any means. My niece is currently going through the same processes that you are and we are sure that she has RA. I was born with it so my brother has seen me with all my limitations and symptoms. He instantly knew she had RA because she has the same lack of movement I have and walks like I do. Even when I see her I can tell. However the doctors are running all kinds of tests on her instead of just coming out and saying she has RA. It's frustrating for her and my brother and his wife. Just try to hang in there and ask the doctors any questions that come to your mind regardless if you think they sound silly or not. Best of luck with this.Hi Wills and welcome to the board, although I'm sorry you are having these problems. Unfortunately, it is sometimes quite a journey for us the get the definitive DX (diagnosis by the way). Many of on us here are diagnosed as Sero Negative RA, that is without the RA Factor present in the blood. The symptoms and treatment follow the same pattern whether RA Negative or RA Positive, but some medics make the diagnosis without the RA Factor.Hi Sarah,
I'm from the UK too - Firstly, you can get a second opinion from another rheumatologist(RD), it is your right under the NHS should you request one. In theory your GP should have offered you a choice of 3 different hospitals in which to see a consultant, where possible. As to the drugs - your GP can give you painkillers and anti-inflammatories but not heavy duty eds such as DMARD's without a prescription and recommendation from a specialist. This is because DMARD's can be very dangerous when given without appropriate diagnosis or care.
RD's are very wary of diagnosing RA because it is such a big lable. There are certain boxes you have to tick and they are probably making you wait a little to definately rule out anything else before giving you some potentially nasty drugs.
Dx is not an easy time as has already been said. I am RF positive - just! My original RD said that going by my bloods (I had raised inflammatory markers but not terribly high) alone he would not have diagnosed RA but my clinical presentation was nearly text book. The amount of visible swelling and inflammation didn't match the bloods and they still don't.
Frustration and anger are completely normal reactions to this. It's like a grieving process. Please feel free to come and rant here at any time. Welcome to the board!
Sarah,Hi and welcome to the board. Sorry you had to find us but you will have a lot of caring people here to help you out.
This is a huge grieving process that we all go thru. Sometimes it is an ongoing process because our "normal" can change in the blink of an eye. Here is a site that will help explain more the grieving process and let you know that what you are feeling is completely and totally normal. http://changingminds.org/disciplines/change_management/kuble r_ross/kubler_ross.htm
Take care and hope you feel well soon!
Hi & Welcome to AI Sarah
I'm not familiar with your healthcare system but I did want to welcome you to the board and wish you well on your journey. I see you've gotten some good feedback so far and I'm sure there will be more to come. Keeping a daily journal is excellent. I've had RA for years and still keep a journal which I find very helpful. Good luck to you and remember we are here for you.
Peace & Love...Neasy
Hi there Wills - Right first of all I am really sorry that you you having RA symptoms, its very confusing and frightning and frustrating at time but you will find some wonderful people on here to help you.
Your "normal" will change and there will be some conflicting results with regards to tests you have thats why making a definite diagnosis is very hard. You are entitiled to a second opinion with regards to a rheumatologist. I was diagnosed about 10 years ago and was referrered to a Rheumatologist by my G.P. after a blood test showed a high inflamtion level. I was prescribed Arthrotec by my G.P while I waited for the appointment. I saw one rheumatologist who added sulfasalazine and made me another appointment for 6 months later, the next appointment brought a different Doctor and in total I saw 7 different Rheumatologists in 8 years,(and as many medicines) I didnt ask for different doctors, it was just that the hospital couldnt keep regular staff for long.
My current Rheumatologist I have had for 2 years and he is a text book doctor. I have hypersensitivity to medicines and have had bad reactions to loads of them, he is a very arrogant, ignorant man who when I had a bad infection a few weeks ago basically told me , there is nothing else he can do, I must carry on with my humira and just put up with the infections i keep getting. I am now being referred to a different hospital in a different town by my G.P. who was horrified and after talking to other people who go to my Rheumatologist I realise I am not the only one who dislikes him.
Your journey with Doctors and medicines will hopefully go a lot better but my mine is just worse case scenario. You can request a second and even a third opinion but ask around a find a rheumatologist who comes with a recomendation, then go see you G.P. , there is such a thing now called "choose and book".
Good Luck and let us know
Everyone has given you some great advice but just wanted to give you a welcome and let you know that you are not alone and we are here to try and help you as much as possible!