Follow up to 'does this sound like RA?'

I have had my blood tests results and my Doctor says I do not have any markers for RA, although my Folic acid levels are very low, and this could explain my RLS.

He said that it could be the RLS causing the joint problems or possibly Fibomyalgia.

MY joints are hot swollen and getting weak and some deformity and they are on both sides of the body.

Am I right in thinking that it is unlikely to be to do with either of these ailments?

I have read that some people do not have markers in the blood with the tests that a Gp does. Should I push to see a Rheumatologist?

I can't help worrying as I seem to be progressing so rapidly. all of this started in April with sudden severe RLS.

Thanks for listening! Cazx

18 Replies

oldestnewest
  • With fibromyalgia you don't get swelling anywhere, I hope the docs can sort them selves out soon.

    Take care and I hope your soon sorted

    Philip

  • Thanks Phillip, you have confirmed what I thought myself!

    Best wishes Cazx

  • Push to see a Rheumatologist.

    Do you know which specific markers for RA you do not have? 'Cos if you do not have Rheumatoid Factor in your blood you can still have RA, plenty of people do, it's called sero-negative RA. The presence of Rheumatoid Factor just makes the diagnosis a bit simpler.

    Or was he talking about the tests for inflammation: ESR and CRP? If they are high it suggests that something in your body is inflamed and it could be your joints. Again, not a definite way of diagnosing inflammatory arthritis but helps the diagnosis on its way. And I think (not so sure on this) that some people here who have been diagnosed with RA or PsA etc. tend to have low ESR and CRP levels despite the obvious inflammation of joints.

    Better safe than sorry - if you don't push to see a Rheumy you might regret it later. Unfortunately, as many of us have discovered, sometimes you only get what you ask for from the health service and sometimes have to ask quite loudly and insistently.

    Good luck,

    Christina x

  • Thank you Christina, my GP has mentioned seeing Rheumatology so I shall tell him I want to go, he is a good Doctor and always listens so I am lucky!

    Best wishes Cazx

  • A GP isn't qualified to diagnose inflammatory arthritis or Fibromyalgia so I agree with the above posts - you must push for a referral as soon as possible. There is a blood test called the anti-CCP which a rheumy will get taken but a GP can't order - this test is more specific to RA - but even if this test negative you might still be in a group of 25-30% of sero negative RA sufferers so you must push. My GP referred me straight away on the basis of high inflammatory markers and a positive RF but I know of another of his patients who had to wait two years to get a referral and sero negative diagnosis from the rheumatologist so I think they are reluctant to refer when the tests are positive but you need to persevere. It does sound as if something inflammatory is going on to me. Tilda x

  • Thanks Tilda, I will ask to be referred, he has already mentioned this so hopefully will do it when I see him in a couple of weeks.

    Cazx

  • Sorry Caz I wrote that post on my little iphone so it's very inarticulate - I meant to say that GPs are more reluctant to refer when the tests come back negative. I learned from a GP friend that rheumatology services are so beleagured in many parts of the UK that consultants get quite cross with what they perceive to be time wasting referrals - but it doesn't sound to me as if you are in that category at all so I'm very glad you say your GP is a good listener and will probably refer you asap. Good luck! Tilda

  • If you are worried about it push for it, I had to and I am glad I did. I used to worry alot about the deformities until Iearned they take a long time to set in permanently and you can still get it under control. Best of luck. What you are going through sound salot like what I went through with getting a diagnosis, keep pushing.

  • Thank you so much su2po, I really appreciate your answer, and will push for it, my GP has said there are many forms of arthritis, and I am seeing him in a couple of weeks so will ask for a referral, your answer has been a comfort to me, as I am finding this sudden change very scary!

    Best wishes Cazx

  • Glad I could help Caz, It can be very overwhelming, hang on in there.

  • You should maybe go back to your docs sooner rather than later as it could take a while to get to see a Rheumy as soon as possible, then they can treat your symptoms and perhaps start to feel better. I totally agree with Tilda.

    Good luck

    Philip

  • I totally agree that it's important to avoid any needless delay. Most Rheumatologists seem to prescribe DMARDs immediately when a diagnosis of inflammatory arthritis is made, which shows the importance of treating the disease quickly. And then you have to wait for them to take effect.

  • Hello Caz

    As the others have said, I would really encourage you to push for the rheumatology appt because only a rheumatologist can diagnose inflammatory arthritis and, whilst blood tests can be an indicator, they are not sufficient on their own to confirm (or rule out) inflammatory arthritis. I know of many people with inflammatory arthritis who don't have rheumatoid factor and I know from my own experience that inflammatory markers are not always raised, even when there is obvious inflammation going on. When I was going through the process of diagnosis, my inflammatory markers were apparently virtually normal, even though I could literally not move for much of the time!

    Re the RLS - has your GP referred you to a neurologist for investigations? I ask this because, again, I think that it needs a neurologist to diagnose and advise on treatment options for severe RLS. I was told by my GP that he couldn't prescribe the RLS meds without me first seeing a neurologist. I have learned over the years that each particular medical specialism deals only with their own field of expertise so there may well be merit in seeing if you can be referred to a neurologist and a rheumatologist in parallel to try to get a quicker diagnosis

    Thinking of you, and really hope you can get some help soon. I would also encourage you to try to get your GP to mark you referral(s) as "urgent" because you are clearly struggling hugely.

    Tillyx

  • Thanks Tilly, I have seen a Neurologist, but it was because my GP was worried about a brain tumour, as the headaches and visual disturbances were so bad at that time. I did try to speak to the Neuro about the RLS, but he just was not interested.

    He did ask me to write to him in 6 weeks (about now) with an update, so perhaps I will have more luck if it is in black and white!

    I am definitely intending to see a Rheumatologist by hook or by crook, and I would like to thank all from this site for their support, which has given me the confidence to do so!

    Cazx

  • Let me tell you what happened to me.I spent the last 20 years going back and forth to the GP with this pain ,that swelling .My poor feet had been so swollen for so many years and had gone up 3 sizes.I was utterly shattered most of the time.Couldn't put my foot to the floor without such terrible pain..All my friends family etc would go out after work or go out for the day,have a social life.Do their gardening etc etc .Not me, no chance .No way aches pains

    No energy, Bed by 8pm at the latest.work sleep pain what a life.Yet nothing showed up in my blood.So i was really labelled as a bit nutty.Probably a lot nutty really!.Oh here she comes again,moaning minnie!You're stressed its psychosematic pain you don't have any illness.You must be depressed,its the nmenapause,or unhappy marraige or work too hard Blah Blah Blah Blah The look on the GP'S face said it all.Overly anxious demanding hypocondriac.

    I felt ashamed and a fraud.I lost my marriage ,my husband didn't want to live with a lazy idle person who had an imaginary illness.I lost friends being unable to socialise.I dropped my daughter on her christening day due to the pain in my feet that was 14 years ago!I just kept plodding along.

    I'd been with the same GP's for 15 years and never thought to question what they said to me ,after all I'm not medically qualified.I just kept popping pain killers got addicted to them creating another problem.It got to the stage wghere I took up to 32 pain killers a day.Overdosing on a daily basis.

    One day my feet and hands really did swell up The pain was excruciating.I couldn't do the simplist of things.I hobbled to the GP'S I saw a locum.My dogs hadn't had a walk for days.I couldn't pick anything up,the pain in my fingers,wrist,thumb.

    The locum took one look at me and said why haven't you been to the Rheumy.He said theres a 3 month waiting list you need to go asap.He told me to go home and ring up the private hospital.I would have to pay £200 for a consultation .However I would get treatment quicker.I went home and 3 hours later I was in the Consultant's private clinic.He referred me straight away to his dept at the hospital.And OMG what a different world.I'm no longer treat as a mad woman.The staff in the department hear what I am saying and every little thing I report makes sense to them.Its a bit like finding the end of a maze.I guess I'm still at the beginning as tests are ongoing .But at least now I feel I am understood and am not a mad fraudulent woman.As I am in Westfield I can claim 75% of the cost back of the consultation cost which helps a lot.I am so glad I decided to ring the Private Hospital up.My principles nearly stopped me in my tracks.

    I have a connective tissue disease.Not sure how it will progress at this stage.Its all very complicated there are over 170 different types of arthritis.GP's don't know whats what .I have now found out.Unless they can see something in the blood they will not take you seriously.

    My advice is to insist on a referall or get a private apt if you can.I am somewhat disgusted at myself paying for a private opinion .But I am so glad I did.Disease modyfiying drugs are the modern preferred course of action.You need to get to the Rhumatologist ASAP.Don't be pushed around.

    By the way the locum DR said I should find a new GP he spotted a lack of action.I have now changed GP's .The difference between the two is amazing.Its just such a shameI wasn't taken seriously for such a long time I could have had treatment and possiblty still had my marriage.

    I think you should not question yourself shall I or shan't I just do it.

    By the way a banana can help with RLS or a magnesium tablet .If your iron is low that can cause it too I had anemia and got RLS I had to have an iron infusion as the iron tablets were difficult to tolerate.The infusion stopped my RLS.

  • That's one hell of a story, it struck me that you never thought to question your doctor. I know this is the standard thinking or allot of people because as you said they have the qualifications, I am lucky to be a very annoying questioner. I will question everything I think that is the only reason i got diagnosed when i did. I'm glad you got it sorted out in the end. Always good to go with your instincts especially when your health is involved.

    What do you call a doctor that finished last in medical school? a doctor...

  • Thank you so much for your answer, you have been through so much and I am glad that you are being taken seriously.

    I am going to push to see Rheumatologist, luckily my Doctor is understanding, and seems a bit more informed , at least he is not dismissing me out of hand and has already talked of referring me.

    I do the banana thing and take magnesium, no joy, although magnesium oil spray is great when the legs are heavy and painful.

    I am not iron deficient, I am told, but folic acid deficient, and am being treated for this now, so we shall see!

    Take care of yourself, you have been so brave, good luck in the future,

    best wishes, Cazx

  • I would like to thank all of you very much for your help and support, I will let you know how it goes!

    Best wishes Cazx

You may also like...