On the first appoinment I had just got back from a month in the south of france and felt quite good, so when he asked questions I gave answers based on how I was that day. He organised xrays, bloods and refered me for a bone scan.
I had the bone scan a couple of weeks later and the scanner asked me to wait while he spoke with the consultant, then came to me and told me that it looked like early RA. I went to my appointment tuesday feeling quite positive that FINALLY we could start treatment and making me feel better. (also, I had been keeping a kind of diary of how I felt on various days to give him, so as to give a more realistic idea of how I was)
He began by looking at my xrays and bloods and said that they were ok, then read the bone scan summary for a while and told me that there was some inflammation in some joints. I told him what the scanner/consultant had told me, and he said that this was his interpretation but HIS was that it wasn't RA. At this I got a bit emotional and asked him to forgive me, but that I was desperate - what is wrong with my wrists and hands? They are not normally this size, I drop things, they hurt, I find steering the car difficult and painful... (not to mention my elbows/shoulders/feet/knees/neck etc) Also, how the week before last I had THE week from hell where I felt totally exhausted ( I have come to terms with the fact that I always feel tired, but this was SO much worse!) etc etc etc Then I mentioned my list of how I'd been feeling and he barely listened to me!
He organised a steroid injection (muscle not joint), more bloods and gave me a prescription for diplofenac to take rather than naproxen and to take. (when I queried this because my GP didn't like it he sneered at the word GP!!) He asked me to come back in four months and to have more bloods the week prior.
I am sorry for this very long post, but feeling desparate and wondering if changing consultants for a second opinion would be a mistake???
Do you think I should stick with this consultant who apparently is quite good - according to google, or change???
I do feel as though I am going a bit mad! Please help!!!
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soootired
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I wouldnt be afraid to ask for a second opinion. I'm not clear why your doctor didnt think it was RA - did they do a blood test? It can take a painful while for them to be sure, but 4 months is rather a long time to wait when you're in pain and confused.
Can you ask your GP? I've had second opinions on two occasions (lashed out for a private appointment) and they've been quite reassuring and gave me a better sense of what was going on. Good luck, hope you get somewhere faster
Personally i would go to PALS this i believe will be in the hospital you have attended to complain. Then i would see my GP to see if there is an alternative. Or if you prefer do this the other way round.Have to say it can take some time before you get a diagnosed as there are many types of RA my self i am sero negitive and don't show in the blood Really feel for you this sort of treatment should not happen.Have you spoken to the nras help line 01628823524 they are very helpful
Welcome to this site some lovely people on here xxx
Hello BOB here
You are just beginning to go through the NHS mincer, you have a further appointment with the consultant, He has had one set of bloods results, Now you will be having interim bloods before the next appointment.
He has taken scans and Xrays also given an injection into the muscle, and reviewed your medications. All of above is what could be expected by the Consultant
When we go to the Hospital we are entitled to a copy of the letter that your GP will get from the Hospital/Consultant, it is always a good idea to ask for a copy of all correspondences between Hospital and GP at the reception of the department you are visiting. This action will become a matter of course and from them you should get copies every time you visit. You will get this through the post.
When you get this letter you will know that the GP should have His copy, make an appointment with the GP to discuss the findings. you will both be reading from the same page
Your GP will most probably will advice to go to the next appointment, remember the Consultant does not know your condition, so the next time you go He should know your condition better. It is part of getting too know you
Remember to ask for a second opinion from a Specialist will cost you £250.00 upwards The Specialist seems to have done on this occasion what would be expected of him, give time you can see a private Specialist if required later as it can become very expensive.
When younger I knew a person who went private and was introduced to the Specialist who was dealing with them in hospital under the NHS.
I would ask for a second opinion. I first saw a consultant rheumy in 2007 and he made me feel so bad I sat in the car and cried. Thank God my gp at the time was convinced I had RA and did more bloods. Then the consultant wanted to put me straight onto steroids which I refused having seen what damage they did to my mother He put me onto sulphasalazine but after a year of seeing him I changed hospitals and am so glad I did. I know it is hard when you first begin the "journey" sorry for sounding like someone off X Factor but things will get better.x
Did he just say it wasn't RA, or did he say it wasnt any kind of inflammatory arthritis? There is more than one kind, and with you neck also being involved, its possible that the rheumatologist doesn't think you have RA but does think you might have one of the forms of spondyloarthritis - especially as he prescribed diclofenac for you. Diclofenac, or naprosyn, or any of the other NSAIDs are the first line treatment for spondyloarthritis, whereas MTX or SSZ or other DMARDs are the first line treatment for RA. If he'd just thought it was osteoarthritis (and not inflammatory), then he probably would have just prescribed painkillers like paracetamol or cocodamol and sent you back to the GP, and he wouldn't have given you the steroid injection (which would only be useful if it was inflammatory arthritis of some kind).
Stick with this rheumatologist for at least another appointment, but if you can, take someone along with you next time. Ask lots of questions about whether he thinks its inflammatory arthritis, whether its RA, or a different type, etc. Also ask exactly what the scans or xrays showed, why he doesn't think its RA, and what he does think it is.
Hang in there. He may be a good rheumatologist who knows what he is doing (even if his manner with you wasn't the best!).
Thank you for your replys. My bloods are apparently negative.
In reply to the last post the reason that I was confused was because my rheumatology consultant did call it inflamatory arthritis yet not in his opinion RA at this stage. And, the diclofenac was because I complained that the naproxen wasn't working. My GP has told me that they are not allowed to prescribe diplofenac anymore so I haven't done my prescription yet as not sure if I should take it or not!
However, the consultant who looked at my bone scan said early RA. I have pain in my feet my hands my wrists my knees, but my bloods are neg for CRP and RF etc. My bone scan showed inflammation of my knees, wrists, hands, ankles, hips, but apparently not enough (?)
This consultant is apparently good according to what I could find on google - he teaches etc. But I noticed at the clinic both times that there is prof something or other and wondered if he would be better? I spoke to the receptionist and she had my consultant call me regarding changing consultants for a second opinion (she left this on voicemail) and I don't know if I should call her back and go for it or stick with mine.
I had heard that it was a nightmare to get a diagnosis, which is why when I was told by the scanner when I had the bone scan that it was RA I felt almost happy because it meant that I wasn't imagining it and there was a reason for everything. Also, I have read and read the stuff about early treatment being imperative and to be honest, at the clinic I saw some scary limbs, so just want to stop any more damage...
I am quite an impatient person, and want things yesterday and have had to realise though that this just wont be the case.
Hi soootired, I am in exactly the same boat as you so can really sympathise with all those emotions you are experiencing right now. I too thought I was finally getting somewhere when a GP told me he believed I had sero negative rheumatoid arthritis but the rheumatologist just completely disregarded that so I too am back at square one, I know that doesn't really help you but you do have to just keep on going. Has your GP had a copy of the bone scan maybe they will be able to tell you why you didn't have enough inflammation or maybe they will be able to assist you in what you should do next. Hope it all works out for you A.S.A.P.
Hi sootired, I can completely understand your frustration at getting different opinions, I have been there, and felt the same as you.
There are lots of different kinds of arthritis and it is not always easy to get the answer for ourselves or the professionals, your initial ultrasound showed some inflammation and your clinical signs and symptoms show that something is "going on " in your body. I know it is not easy and the wanting to know what is wrong with you is only to be expected. I had a similar experience last year and was told in June this year that I have probable Psoriatic arthritis despite having a positive Rheumatoid factor. I had come to think that I had RA initially and was firstly told it was undifferentiated inflammatory arthritis, I also had a slightly raised urate level so may have had a gout element to my problems. When I was told no definite diagnosis it was very frustrating as I wanted to know exactly what was wrong with me but in hindsight I am glad that a firm diagnosis was not given until relatively sure. I was given the steroid injections which can be given for any of the inflammatory arthritis conditions and these helped greatly and was eventually started on methotrexate in june this year.
I know it can be frustrating but hopefully the steroid will help and you will get a formal diagnosis soon
keep your chin up ( fingers crossed if you can ) and will be thinking of you
crisxx
HI, So sorry to hear what your going through. I got a second opinion and it was the best thing I did. My new RA consultant is lovely and I email her !!! She always replies and helps me when required. Pain is awful to live with but keep at it. Do what's right for you and I really hope you get the help you need. Take Care x
Good luck getting a firm diagnosis. Apparently these autoimmune diseases often have blurry lines between them and can share symptoms. I have seronegative inflammatory arthritis with elevated liver enzymes, and some psoriatic symptoms thrown in for good measure.
I think you are over thinking this. Inflammatory arthritis is a diagnosis. Rheumatoid Arthritis is just one type of inflammatory arthritis. You cannot diagnose RA on the scans alone, so I feel it wasn't right to be told you had early RA without knowing everything because you need to look at the bigger clinical picture. To be honest, it really doesn't matter if you're formally diagnosed with RA or not, as long as you receive the treatment.
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So frustrated!!!
Just another little add on
RA not yet confirmed, is this site still for me
Possible rheumatoid arthritis 
out come from yesterdays meeting with registra
