If not RA then what is it I have?

Very stressful appointment with the rheumy this week, apart from the fact he introduced himself as if we had never met before and asked me all sorts of questions that he asked at our first meeting 11 months ago. He announced ,after a quick cursory, examination, that whilst he doesn't doubt I am in pain, he can find nothing wrong with me. I came away feeling like a fraud and cried buckets when I got home. What else can it be, if not RA?

My father had it and three of his siblings have it, so it is present in the family. So confused and distressed right now. JoJo xx

34 Replies

  • How dreadful, especially after waiting so long for an appointment! You must feel shattered. Simce there's RA in the family you'd have thought that he'd make a big effort. Did he really not explain at all why he didn't think it RA? Ie are your blood tests normal and no sign of inflammation in the joints?

    In England the consultant writes to the GP after the appointment to say what the conclusion is, so I'd book an appointment with your GP and ask for an explanation. And complain! As for other things, did he mention fibromyalgia?

    So sorry for you, polly

  • Hi Polly, I have been wondering about fibro myself but no that wasn't mentioned to me. Jo xx

  • Oh JoJo so sorry that you are feeling so gutted. I feel for you greatly. I have had a 15 month fight with vary docs. I am sero negative so nothing showed in blood tests apart from some raised levels of something not too sure what no one has explained it to me, but no antibodies.Please go and see your GP as Polly suggests and maybe you will have to be like me and just keep pushing back and saying you are not accepting what they tell you, you know what is happening and it is real. Have you had full body scans that is when they started looking at me as it showed in just about every joint in my body.

  • Hi I have only had an X-ray and an ultrasound scan so far both on my hands. Neither showed any damage which is brilliant news but I'm no nearer to a diagnosis because of it :-(

  • You might have to go private for the blood tests there are certain tests which are not available on NHS. I am not sure what your financial circumstances are it cost me £900 for blood test and £300 consultation fee 3 years ago. It was worth that because I suffered tremendous pain before they could start me on any sort of medication for two years being told results were inconclusive. After that they started me on steroids for immediate pain relief and now I am on biologics. You have to keep on asking for blood tests xrays and MRIs. I wish you do not have RA but if it is then they need to do their job properly to avoid damage to your joints. Do not give up keep on going keep on making GP appointments keep on asking for regular monthly blood tesst and ask them to explain them to you or get a copy of the results from GP they will charge you £5.00 but then you can look up for explanation on the internet or discuss them on the forums.

    best of luck

  • Can I just add I have never been charged £5.00 for my blood test results, they are my results so I'm entitled to see them for free! Is that £5 charge under a private consultant? Good LilacLion, I really feel for you, have you had any X-rays or scans? Xx

  • They do show them to you but if you want a copy they do charge. It is not private, regular NHS surgery. I thought it was the norm

  • Blimey that's harsh:) At my surgery they will give them to you free of charge, when I was on MTX and Sulfasalazine I had a booklet for my blood results to be recorded, I though that was the norm? I know we do get charged £15 though if we need a GP letter though! Best wishes.

  • There is a standard cost for getting printed copies of info from the GP, depending on if it is electronic or needs to be photocopied. The minimum is £10, so perhaps your GP has a set of lower charges. I needed a full set of everything for the last 18 months and was charged £50 - the maximum allowed.

    This is a big issue for people trapped in the IB - ESA- WCA nightmare merry go round, as the individual is fully responsible for getting info, not the DWP. These charges are horrendous if you are trying to survive on benefits. Some consultants are charging up to £200 per letter for you to give the DWP. There are some campaigns at the moment trying to reduce this cost to us. Have a snoop around the internet, they're easy to find.

    I have a very nice nurse who does the MTX bloods, and if I ask casually if there is a recent letter, can I have a copy, she just presses the button and it rolls of the printer. A really lovely person.

  • Thank you for this information, I'm interested about the private blood tests the NHS don't do. I must ask my GP about this as she has never mentioned it to me and she knows how desperate I am to find out what is wrong with me.

  • I will look into my paper work and will let you know I got them done at Cromwell Hospital London

  • Jo Jo how horrible and distressing for you. It took just over 2 years to confirm my diagnosis as I started as sero neg and the frustration of not knowing what's wrong and feeling like you are not being taken seriously is awful. It's hurtful but most if all pretty scary as I was worried that whilst they were taking their time to diagnose then I might sustain damage to my joints. After the first 10 months I changed rheumys and this really helped me. The first sounds a little like yours. The second, although still took his time to diagnose me always scanned joints that were painful and this I found very reassuring. From my 2 years without diagnosis I understood that it can sometimes be difficult to diagnose. I think I'd be asking for a new rheumy. No one deserves to be treated as you have. Like the others have said go to your GP and chat it all through with him. I also found the nras helpline fantastic, have so much time, knowledge and patience ( in my case!!) they are fab, kind people. I really feel for you, Rosie x

  • Jo Jo I am horrified for you. All this time waiting and stressing only to be treated like this? Did you even get a chance to ask him what it could be if not RA? Hang in there and don't rule anything out just yet. As Rosie says the NRAS helpline are great - I phoned them about my situation on Thursday and it calmed me down immensely. Tilda xx

  • As the other member have replied. Book an appt with your GP book a double appt to give you more time to discuss your issues. Remember every patient is entitled to a second opinion and this does not include your GP.

    Most GP practices will give you your blood results. Mines normally gives me mine verbally other online/ onsite get them as a paper copy.( Free of charge) Though I do know that my GP practice charges for copies of certain requests but not for blood results.

    Good doctors spend time with their patients, I would most defintely seek s second opinion.

    Kind thoughts coming your way


  • Hi Carole I did ask the GP on Thursday about getting a second opinion but she said that the rheumatologist would have to agree to that before I could get one. Both my mother and I were gobsmacked at that. The Isle of Man NHS has its own rules and regulations and some if them just beggar belief!

  • Hi one and all, thanks for all your comments and advice.

    Basically for well over a year my blood tests have shown raised inflammatory markers but the RF test has constantly been 'normal' (whatever that is). My Dad had RA and died from lung complications because of it. Three of his siblings also have it, one of which I know is sero-negative, so there is a definite family connection.

    I have been off work since October last year with painful, burning, stinging joints, fatigue and mind fog. My job is office work but I cannot type (I use touchscreen at home) nor can I sit for long in one place and certainly not at a desk. As a result my employer is now looking to medically retire me if I have not returned by this October.

    I live on the Isle of Man and we only have one hospital and one rheumatologist, and he went AWOL for a time a while back which threw the whole department into disarray.

    He said he needs to see me when I am at my worst but 15 weeks ago when I was admitted to A&E and they told me I needed to be seen by rheumatology urgently it was HIS department that wouldn't give me an emergency appointment with him. I eventually (after many phone calls and pleading) was given an appointment for 6 weeks later, that was cancelled and another made for a week later. That one was cancelled by telephone with just 3 HOURS notice, which is apparently the day the rheumy went AWOL. I finally got to see him this Wednesday some 15 weeks after I was flaring really badly. My symptoms were reduced because my GP put me on steroids when I was flaring and couldn't get to see the rheumy.

    I wondered about Fibro myself but when I saw my GP on Thursday (day after disastrous Rheumy appointment) and asked her if not RA what is it? She patted my hand and said "Let's not go down that road yet"

    I cannot afford to go private, ten months on reduced sick pay has almost crippled me financially, in fact if I don't get back to work soon, I think I will lose my house.

    Hence my frustration, exasperation and desperation

  • Is there any possibility that it is spondyloarthritis? that can be a nightmare to diagnose as its seronegative, and in women you often don't get the damage showing up as strongly as men on xray. Do you have any back pain? particularly pain in or around the lower back and sacroiliac joints. If so, then google "inflammatory back pain" and see if you tick all the boxes for it. If you do, then definitely go back to GP and tell them that and ask for a sacroiliac xray. Also remind your GP that it must be something inflammatory because you respond so well to steroids.

    If you don't have the back pain, but do have swelling and pain in other joints, then ask if you can have an xray done when they are bad.

    Can you take NSAIDs? If so, you could ask GP for a prescription for full strength ones (over the counter ones aren't nearly as strong). If you respond well to those within 24-48 hours, then thats another sign that its an inflammatory disorder.

  • Ooh I don't know, I hadn't even considered Spondyloarthritis to be honest, but you might have a very good point. I do suffer with lower back pain especially in my tailbone which makes sitting in one position for more than 20 minutes or so at a time, very painful. I did have my sacroiliac joints x-rayed last year sometime but my symptoms have worsened since then.

    I'm currently taking 100mg Celebrex twice a day, as Naproxen and others that I tried were too rough on my tum. I take Omeprazole too, but I do still suffer tummy wise just not as much as I did on the Naproxen.

    I'll look into this, thanks xx

  • Nothing worse than being in limbo, if you have fibromyalgia then there won't be any swelling of the joints, if you do have some swelling then the doc needs to look again because there definitely is no swelling with fibromyalgia , good luck and I really hope you get a proper diagnosis very soon.

  • Thank you Philip I do definitely get swelling. Just wasn't swollen when I saw the rheumy this week. Very frustrating. But thank you for the information about fibro, much appreciated.

  • Hi liliac lion,

    I have known patients travel from the Isle of Man to The Clatterbridge Centre for oncology.I know the circumstances are different but it is still medical. Can you ask for a second opinion from another GP?

    After all our health is lifes most important objective.

    Good luck and dont give up.


  • I believe JoJo's GP is very much on side but has her hands tied Carole x

  • Hi Carole, yes I've been to Clatterbridge myself several years ago for an MRI scan but that was before the island got its own MRI scanner. We can only be referred across to the UK for things that the hospital here cannot do. Some cancer patients are treated here dependant on the type of cancer they have, others still have to be referred to Clatterbridge. They will not refer anyone 'across' for a second opinion as it is just not cost effective. If a patient is insistent then they would have to go private and pay for their own fares and accommodation on top of the treatment.

    My mother is a Manx resident too, but last year she suffered a terrible accident on an escalator whilst on a trip to Liverpool and was hospitalised but neither the UK NHS nor the Manx NHS would pay or assist to repatriate her. The reciprocal health agreement between the UK and Isle of Man is a delicate and intricate flower, and it won't take much to see it wilt and die altogether, which is what the last Labour government tried to do. People's health coming second to politics yet again! :-(

  • JoJo I saw my rheumy about 3 weeks ago. He wasn't rude or dismissive but he didn't listen properly - he just felt pleased that all my joints were not swollen on the day. He has said before that we all have good and bad days but it just happened mine was good. It is terribly frustrating to be dismissed and worse for you because its been such an ongoing battle I know. They need to see swollen joints and we try hard to oblige but it a no win situation if you have a rheumy who doesn't take trouble to listen and be extra careful. I think I'd have a weeping and wailing wobbly in the rheumy dept of your hospital and force their hands? Xx

  • Getting upset just doesn't seem to work Tilda. He has a very warped sense of humour too which my poor Mum took offence at, at this last appointment. When he said he could find nothing wrong with me, my Mum said whilst that day was good there are some days when I can hardly get up. Whereupon he motioned to my walking stick and said "well on those days Mum you take that stick and beat her until she does get up" then he laughed. My Mum was horrified at this and could not believe her ears. As we were leaving, he came up the corridor behind us and called out "Of course Mum you can't really hit your daughter, that would be illegal!" and laughed again.

    My mum just turned to me and said "Does he think that's funny?" I was so distressed by then I just wanted to get out and get home. I've told several people this now and each time I say it or write it down, it seems incredulous even to me and I am so glad my mother was there as a witness to it as I don't think people would believe me otherwise. I know he was only joking but I did feel it was in bad taste and my Mum was clearly upset by it which is why I think he came after us and made his little clarification statement. A very bizarre and distressing appointment all round really.

    Sometimes I just wish I could afford to leave this island and move back to the UK for my health's sake but where would i go? You hear such terrible tales of hospitals in the UK too it's hard to know what would be for the best.

  • Jojo I don't know what I would do in your situation. Perhaps research all the good places to live for RAers from this site and go and try it for a year? Your mum was right to be horrified by this wholly inappropriate joke. I really think I would have said to him that given his attitude and going AWOL you knew exactly whom your mum should be hitting if anyone. Its horrible and not remotely funny in this context!

    My rheumy was a bit off hand with me this time in that he and the physio took a leg each and said ready steady go - now shaky shaky - testing my hips.

    Then, after telling me it was my lower back (degeneration) that was the problem I asked if there was stuff I could do for it and he just said "keep active" and then they went into a wee ditty about keeping active! I wasn't upset by this because he believes I do have RA (having diagnosed me 18 months ago) and tells me that seeing my hands so unswollen had put him in a good mood. He seems reasonably kind and just wanted to talk about other stuff I'm doing in connection with NRAS. But when I told the woman GP she could scarcely believe her ears?!

    So imagine what she would make of yours! Xx

  • Oh my goodness that's awful Tilda, how humiliating! Though in a weird way I'm glad its not just me that feels ridiculed. But that's not the point, there's a fine line between light hearted banter with a patient to make them feel at ease and poking fun for the hell of it. I wish my GP was as horrified as yours, she simply shrugged and said "That's his way". But I don't think that makes It acceptable in any way, shape or form.

    I don't know how I'd survive financially living for a year somewhere else. You are not entitled to Manx social benefits if you are not on Island (indeed they even stop them for every night you are in hospital whether here or across) and I could not claim anything under the UK rules because I am a Manx citizen.(We're not even part of the EU despite the fact we pay VAT) Not that I want to be claiming benefits at all but I am just not able to work currently. Also my family who are my support network are here on the island. I'd have no-one with me. Difficult, I just do not know what to do for the best.

  • Hi Jo Jo

    Thanks for you reply. I am sorry you are in such a dilema. Having read your reply and understood the complex situation you are in. I apologise if I may have caused you further distress with my suggestions. I now fully understand how you are trapped in a situation exacerbated by medical ignorance and lack of empathy caused by a medical professional . I hope you find some resolution to this dreadful situation.

    sending you my very best wishes


  • Hi Carole thanks and please don't worry or apologise, I'm very grateful to anyone and everyone who has taken the time to read my question and respond.

    I have lived on the Isle of Man for nearly 18 years now but it is only this past year that I have come to understand the restrictions and frustrations faced by many here when we have a medical problem when there is not the infrastructure, knowledge or assistance available to us. I really feel a permanent move back to the UK may become my only choice, but I wouldn't know where to go for the best and just the thought of packing up to move is a nightmare in itself.

    I hate being so defeatist, everyone here is being so kind and helpful, it's just things on this little rock are done differently and certainly not always for the better.

    A podiatrist I saw back in May told me he had come over from the North East of England a few months beforehand but could not wait to move back as he found the island too 'twee' and the health service was reminiscent to him of the UK NHS of twenty years ago. He was astounded that things he considered to be basic services were not available here. He didn't elaborate so I'm not sure which services he was referring to.

    It's a quieter pace of life here on the Isle of Man and the crime rate is exceedingly low, but unfortunately the standard of health care is also exceedingly low in my opinion. I just want a diagnosis and treatment and I don't think that is too much to ask, wherever you live :-)

  • Hi Lilac_lion

    I think life is getting harder out there with all the changes to GP budgets, different budgets, and the shortages of Rheumys all round. It does sound like you need to be strong, and keep on pushing, but heaven knows if you're ill and suffering from the exhaustion and pain it can also seem like too much to cope with. Just do what you can on a good day, and give yourself all the tlc you need on the bad days. You will get there eventually, but why does it have to be a struggle? Your mum sounds great. You're not alone, but in pain & foggy, it can be very lonely. Hang in there.

    I too was reduced to tears a couple of weeks ago, so I know exactly how you're feeling. .

    I won't go into details, except that I have been diagnosed & treated for Arthritis secondary to Inflammatory bowel disease since 2000 in a different hospital, and yet this month I was told that I was to be discharged from the Consultant because I didn't have arthritis. He said I have Fibro, and there was no treatment for it, so bye-bye.

    I too was very upset and tearful after that, because 18 months prior his senior had written I had a PSARC score of 30 tender and 11 swollen joints, a BASDAI score 8.5 and a total spine of 9.8. She said I was very poorly (no kidding!). Now I have no care or treatment at all.

    Perhaps not the best place to ask this, but has anyone else been dismissed especially with the "fibro" tag at the point where biologics are the only answer?

    I smell a rat.

    (Sorry about the letters & scores etc., they are explained on line if you do a search. it's not an in-crowd thing, just a very useful shorthand)

  • Bess that is just terrible. I cannot believe how they can just cut us adrift like that. I did wonder if my rheumy was hinting at Fibro too I must admit.

    You're right though when you feel so ill, and your brain just won't function properly or coherently it is so difficult to fight your corner and stand up for yourself. My mum is great but I am also aware that she is nearly 70 and not in great health herself, it shouldn't be down to us to fight for treatment, it is so, so wrong in this day and age.

  • Jo Jo your situation has haunted me a lot today and I can't think what to suggest. It really is just mind boggling that any medical professional could treat you in such an offhand and callous way? My experience was a bit humiliating - which I think was why I came back on and asked a question about my pins and needles and MTX. I felt that I'd been given a thumbs up from my rheumy without him making any real attempt to address the peripheral neuropathy issue. I felt really strange afterwards because I knew something really wasn't right for me still but couldn't think how to deal with it. This is not the same as your situation at all but I do feel I could easily have been in your situation and I know that Earthwitch has had a very similar struggle with our rheumy up here. So I do think I'm very fortunate in lots of ways.

    On hearing that you are surrounded by family and that you are a Manx citizen I can understand your reluctance to leave it all behind when you are feeling so vulnerable. All I can think is that you must try to address this in any way you can - through your GP who could refer you for physio and pain counseling if these are available in IOM? It makes me very appreciative of being part of Scotland and the UK and even if Scotland gets independence next year we will definitely remain in the EU. I just feel for you so much and think if I were in your shoes I would look very hard into alternative treatments and lifestyle shifts as some of those who are unable to take the drugs because of allergies etc get some relief from. Tilda xx

  • Dear Jo, jo I am so sorry to hear this you need a second opinion some how x

  • Thanks Summer, I don't know how yet. But I need to get a second opinion somehow. x

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