So today was my rheumatology appointment which my doctor arranged because of an x-ray report. I have written before about my story but basically it is:-
RA runs in my family, I get morning stiffness with swelling of hands and feet, I feel constantly exhausted, I am in awful pain, I have swollen lymph nodes, 13 years ago I had a large swelling in my jaw which was diagnosed as TMD, I get very puffy eyes which feel dry & gritty at times, I get the feelings of flu which doesn't turn into flu just swelling and pain, my knees are swollen & give way at times,my middle toes are agony, I have a nodule on my wrist & nodules on most of my knuckles (even though these feel boney they are not). Have seen a rhuemy four times now & each time they dismiss the symptoms saying they are Fibromyalgia & osteo arthritis not RA. I do know that some of the symptoms I am getting don't fit with fibro or osteo arthritis, I thought the inflamed nodule on my wrist was most telling (so did the radiographer who said in his report that I needed to be treated by a rheumatologist).
Rheumatologist called me in for my appointment he looked at me and asked why I was there and I said I was referred because an x-ray on my wrist showed a nodule which looked like RA. Well what came next was unbelievable he pompossly told me that this is the third time he has looked at me & told me that you have fibro & osteo. This was before he did anything. I asked why would the radiographer think it was RA and he said "oh he can't diagnose you". He then took me to another room asking my friend who was with me to stay where she was as the room was a bit small. Anyway when I was in the room with him & his nurse he went over my hands with an ultrsound wand squeezed my feet & hands which hurt so much so that I ended up crying. Whilst in the room I did say to him "I didn't ask to be referred back to you, I thought I was going to see a hand surgeon who would be able to fix my wrist with an op". He got slightly politer after that. He said my x-rays show no deteriation between the joints.He showed me an x-ray of my hand in which the bones did look perfect but I have several nodules on my knuckles which don't show up on the x-ray, what I would like to know is what are these? is this osteo? I thought osteo showed up on x-ray. Maybe I should put that in questions.I also took photos of my ankles when they looked like tree trunks, attached to message, (sorry it's bit grim) he made no comment. He said he would look into upping my pain medication and that I should make sure I rest when I need to. Other than that goodbye. Hope everyone else is having a good day, or as good as possible.
Franbie,
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Franbie
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Franbie,ask to see another rheumatologist or go private if you can. There is nothing worse than a dr who thinks they know everything and have no empathy. The dr treating me told me once i am an expert and i don't know anything. He says ra is such a complex disease. He has empathy and i like him for it. Sylvia.xx
Thanks Sylvi. I was talking to my sister and she said the same thing, so I think I will look into how much it costs. I was also going to see if I could get the anti-ccp test done privately. Hope you are feeling a bit better than you were yesterday. It's so horrible being in constant pain. Franbie xx
This sounds like a very distressing experience. Something tells me that the consultant concerned would not be too happy if your description of how he behaved reached his bosses i.e. the local NHS Trust. Have you got the radiographer's report so that you could quote his/her exact words about needing to be treated by Rheumatology? You could start with your GP though, depending on how sympathetic he or she is, and ask them where they think you should go from here.
I think a private consultation might be a very good idea. Your GP might be able to recommend someone who is both very good & has connections to the NHS hospital locally - that way whatever the private Rheumatologist decides could be passed on to that so & so you saw today or, preferably, another NHS Rheumy.
Hope you've recovered from this horrible appointment & can start to move forward again.
Thanks Luce. It was horrible & I am still a bit upset. What you said about getting the x-ray report is a great idea and I think I will phone the surgery tomorrow and get the ball rolling. That would be good wouldn't it if the horror I saw today had to eat a bit of humble pie. Hope you are doing ok.
theis may put some weight on your case to get the other rumi to change his mind
take any blood reports you can get from your doctor
but try not to influence his diagnosis by having the doct write down on the referal letter what the other guy has said (THIS IS MOST IMPORTAN) as it will cloud the issue in his diagnosis of you because he may read this and go with what the other specialist says on the nhs.
when i whent i took out some of the paperwork my doctor had given
and then he told me where my aches and pains where without telling him
hope this is of use to you.
then try to get in on the nhs with this rumi specalist
I think that you are entitled to a second opinion - try going to your doctor and ask to be referred to another consultant - do you have a hospital in a nearby town that he coud refer you to? I think you should discuss this with your dr and be prepared to fight for this.
Why is it we have to fight for a proper diagnoss and treatment? Just when your at your lowest and in pain you have to add fighting on to it too.
Lots of luck - and a plague on the unsympathetic Rheumy!
The pains in my ankles gives me a lot of problems, my toes hurt really bad as well. It does get you down having to fight to be heard. A definite plague on the unsympathetic rheumy. Lots of luck to you too. Franbie xx
Hi Minka. I have looked at the link you sent & just checked my ankles the swelling is on the outside of my ankles rather than the inside. so hopefully I don't have that problem.. Thanks very much for sending it though it's something I can discount for now. Hope you are ok. Franbie x
It is really horrible when a doctor makes their minds up about you and can't shift from this position whatever you say or do. I had a GP a long time ago who was like this and I ended up meeting his eye and saying "do you honestly think I would come back here and see you if I had any choice?". He backed down but I never liked him.
I don't think you can see this man again because even if he were to accept a change in diagnosis he would resent you for it and that would cloud his judgement. You need a fresh start with another doctor and as John says you also need to make sure that this person approaches you without being influenced by this unpleasant and unprofessional man. I hope your GP can help you and it would be a good idea to get your anti-ccp if this rheumy wouldn't even take this for you. There are other forms of inflammatory arthritis that should also be checked out and if your ANA is positive you could be tested for Lupus and Sjogrens too before everything is put down to Fibro and OA. There are ways of approaching patients even if you are sure that you are right and this guy really sucks at it! Tilda
Thanks so much Tilda & I agree he will definately be biased. I have phoned my surgery to ask for a copy of the x-ray report on my wrist to see where it all started and why the radiographer thought I should see the rheumy. They have said they will need to ask the doctor whether they can give me a copy or not. I hope to pick it up tomorrow.
Don't just get the report - make enquiries at the hospital where you had the xray done, and see if you can get a copy of the actual xray on a CD. They may charge you for this, but the charge should be reasonable (between £10 and £20 depending on which NHS region). Then you can take the CD to any private rheumatologist.
Tests, like blood tests, will cost a lot if you do them privately, so ask your GP if you can get any of the standard rheumatology tests done again by them - things like ANA, RF, anti-CCP, and ESR and CRP to check for inflammation. GPs can order any of these. If your fingers or any other joints feel like they are inflamed, ask GP if they can also order an ultrasound scan of any actively inflamed joint - and then get a copy of the report of that too. If the GP orders the ultrasound it will be done by the radiology department, and then reported properly, not like the rheumatologist just waving it over the area and making an on the spot judgement.
Don't necessarily expect your GP to know who the best rheumatologists are. Make other enquiries, and google the ones around, and look up the information about them to make sure that they are inflammatory arthritis specialists. Also, if you are going to go private, try and find a private rheumatologist who also works for the NHS in a hospital or clinic that you could easily get to - that way after the initial private consultation you may be able to get referred back to the same doctor in the NHS for treatment. You may want to ask when you book an appointment whether the rheumatologist does refer people back to his NHS list.
Your information is great, very good advice. I like the idea of getting the x-ray on CD will look into that tomorrow. The blood tests can be expensive I have already booked for the Anti-CCP test privately at a cost of £98.95. Will be worth it though, at least I will know once & for all whether the family history of ra will hit me or more likely has hit me. I will google the rheumies in my area. Have already had a quick look and there is one that looks good. Thanks again for the advice it is very useful. Franbie xx
I have a friend who is going through exactly the same; she is seeing a Rhuematologist today as she called in a few favours, her gp is saying she does not have RA but her legs like yours are terrible also she suffers all the other symptoms, I was diagnosed 2 years ago but at the time didn't have as much swelling as she gets or you. Mine was diagnosed by positive Rhuematiod factor and Anti-ccp I have asked that my friend ask for this test because you can still be zero negative and still have RA. Hope you get some positive results soon, it's awful having to suffer the consultants abuse, I hope you feel better soon. Gentle hugs and love Carol
Thanks Carol. It is bad to have to fight so hard to be heard. I am so sorry for your friend as well it's just so wrong that you have to go through this. Both my dad & sister were both sero negative on the rheumatiod factor and esr. Their specialist (the same one) said he would diagnose on symptoms rather than results.
Your legs look like mine on bad days and in the evening. First appointment with current consultant from blood tests, RA, CCP and CRP she said there,s no need to bother with more tests (except check up for liver etc) as its obvious and conclusive from these that I have very agressive RA. From what I´ve learned these 3 tests are the basis of diagnosis plus physical systems. I have to go private at the moment as the waiting list for state care for chronic disease is up to a year, so still waiting to be called for appointment!
I agree with the above if your doctor can arrange these blood tests for you the go and see a private consultant. Good luck and here´s to a painfree life.
Thanks for that & I hope a painfree life for you too. I am about to start looking at going for the blood test first. Then I will look for a new consultant.
Franbie my heart goes out to you. I am battling to get a diagnosis too, though my symptoms are not as severe as yours, I totally feel your frustrations and absolute disbelief that a so called professional is behaving in a manner that is anything BUT professional.
We are all (to quote the song) "sick and tired of always feeling sick and tired", they see you for all of what, 15 Minutes tops? and on that tiny time slot of one day where they barely glance at your notes they play 'God' and decide you're not worth them bothering with. How dare they!! We're sick and we need help we are not to be treated as an inconvenience! I'm so angry for you sweetheart I really hope you see someone else who takes you seriously and gives you the help and treatment you clearly need.
Thanks so much JoJo. He made me feel really bad as if I was a neurotic nuisance & the thing was it was the radiographer who saw what he thought was an ra nodule & asked that I be referred back to him. The trouble is now I don't know if this is going to follow me around and interfere with me being listened to. I hope you get your diagnosis sorted soon it's hard being in limbo. Franbie xx
Hi Franbie,
So very sorry to hear of your upsetting and quite frankly unhelpful consultation. Believe me, as someone who was diagnosed over 50 years ago, yes as a child, I am not Methusala, I still to this day, meet a consultant with which I have absolutely no rapour. Please ask for a second opinion, or your hospital has more than one consultant, explain your feelings to the Rheumy nurses, and ask to see another consultant, don't feel worried or embarassed, it's absolutely necessary to a/ find a doctor you can speak to, and b/ get the correct diagnosis, so you can get yourself feeling under control. The very best of luck getting your diagnosis, and to feeling happy again, yes, it is possible. Let us know how you get on.
Hi Ann. I did have my thyroid checked when I was much, much younger because of an unexplained weight drop (about 10 kilos). Apparently it spiked up to just over the normal level but when I saw the consultant they checked again & it had gone back to within normal levels. I was ok after that & put weight back on. Franbie xx
Sorry to hear that you are having such a tough time with diagnosis.
I hope you are able to see a different rheumy.
My feet and ankles went just like yours at one time.
I showed the pic to my rheumy, and she just dismissed it and said "That's not ra ".
No discussing it, end of story. Makes my blood boil when we are treated like that.
I've read bits about thyroid issues and from what I can gather, the range of normal in the uk differs from other countries, so people who do have a problem don't get treated for it.
Thanks Nic. That's just what this rheumy did he just looked at photo's dropped them without comment as if they were of no importance at all. Franbie xx
Hi franbie, Please don't give up on this,i started with swelling of the wrist my right one and this was 7 yrs ago i was in so much pain with it liked i had broken it,i went to see the rheumy who said its not ra its fibro he gave me a steroid injection in my bottom and that was that,well over the past 7 years i was getting worse more joints swelling pain like i've never experienced in all my joints so went back to my gp who sent me back to the same rheumy who did bloods and confirmed it was ra,had xrays of feet and hands which showed also minor degenerated changes to the joints and the same with my feet,i said to him you don't remember me do you i came to see you 7 years ago and you told me i had fibro he said i don't think it was me who you saw,i came out thinking they will try and cover their own backsides just so you don't complain,i'm now on 15mg mtx which i have to keep stopping as my alt levels keep going up,have also just been told i have an hiatus hernia and damage due to acid on my stomach.
I know what you mean about feeling like your wrist was broken, I feel like that if I move it in a certain way it shoots pain along my thumb then back down my arm and makes me feel physically sick. I've had the same steroid injection as wel.l I am thinking of asking the doc to give me another one. The thing is that if the rhuemy thinks it is just fibro then why would he give a steroid injection, as I have read that these are for inflammation. Makes you wonder doesn't it! I have read alot about fibro as I expect you have & from what I have read & heard fibro is usually a secondary disease that someone develops because of something else wrong with their body. I have now got a private blood test sorted so I will be back when I get results. I am so sorry to hear you are having so much trouble with the mtx that is awful. I hope they help you soon. Franbie xx
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