jules44 Member Posts: 26
edited 4. Aug 2011, 04:12 in Living with Arthritis archive

Can anyone out there let me know if they have had to fight for years to get an earlier diagnosis confirmed after it was mis-diagnosed by another doctor due to being seen as too young to suffer from arthritis and a trapped nerve?

now its been confirmed and I am getting the help and treatment that I should of had over the past years, my consultant does not always listen to me, its funny really because he seems to think that he knows my body better that me!!!!
I have been diagnosed with OA in my cervical, Lumbar spine, right hand. knees and feet, I also have tendinitis in my hands and wrists (more severe in my right hand and wrist) and the onset of osteoporosis in my left hand.......

I was first diagnosed with arthritis and a trapped nerve in my lumbar spine at the age of 17, I was offered an x-ray to confirm the diagnosis but refused as I felt at the time that this was not really necessary..... big mistake..... after seeing another GP about the pain and pain relief he mis- diagnosed me as having mis-alinment problems... this became apparent when I requested a x-ray approx 10 years ago and was denied one by another GP.

I went to see another GP n my doctors practice approx 4 years ago with neck pain, he didn't give me a diagnosis just told be welcome to old age and that was that, so I requested a copy of my medical notes about 2 yrs ago - this is when I found out about the mis-diagnosis....

Any how, I fell in the GP's car park just over a year ago now and I managed to get an x-ray on my lumber and cervical spine, I also asked for a further x-ray on my right hand, my GP at that time agreed as long as i didn't ask for any more x-rays!!! when I got the results.... guess what.... yes I was told that the original diagnosis was correct I had OA and a trapped nerve in my back and oa in my hand. A few months later I took one of my dogs for a walk and the next morning i asked my husband to take me to A & E as i could hardly walk, when i was finally seen i was told that I had OA in my knees, i had an appointment already booked with my GP and he sent me for an x-ray on my knees, my feet and my left hand, the x-rays confirmed OA in my knees & feet and the onset of osteoporosis in my left hand, my consultant in his wisdom claims that the pain that I get in my hands, knees and feet are related pains to my cervical and lumbar spine!!! as I am know 44 yr's old and have lived with this since I was 17 and have gone through 4 full term pregnancies I am sure that I know where I get related pain ............................

Has any one else had a similar experience???? or been told that the pain they have in their back is just muscular with out being properly examined by their doctor???


  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Julie,

    Welcome to the forum and glad you have found it cus this lot are brilliant.

    Kinda had similar to you and I had to fight hard to get help for my spine when it caved as well as get a misdiagnosis turned over. Its not fair you have to and even worse when they could have done something if they had looked at it earlier.

    thats what happened to my neck By the time someone bothered to look it was too unstabler (what ever that means :roll: )

    They don';t like giving us xrays... its to do with the radioactive side and well thats probably the line your gp is taking there......

    have you had a mri though flower cus that can show a lot more than an xray.

    They did get the diagnosis and they did do some surgery in my 20's but then they just left me to get on with it..... I reckon that cost me a lot one way and another so i reckon people should fight for some treatment cus I didn't and really should have done.

    I do get a lot of referred pain in the legs, feet hips, arms and hands as well as some lack of feeling and sensation most of which is from the neck and spine being so shot.

    I am glad you are now getting the treatment you should have had and hope it will improve things considerably for you? Nice to meet you and fingers crossed for you. Cris x
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Julie

    I cant help, my doctor was very quick of the mark for me. Just wanted to say welcome, most of us on here are a lovely bunch. If you ever want to off-load, by all means do so, we all do it. If you want some questions answered, ask away and we will try and help.

    Hope to see you around the forum.

    Karen xx
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Hi Julie,

    I had pain since my teenage years and just put it down to too much clubbing, after having my first child the pain started to kick in and started being told it was muscular, after my second child and the pain becoming unbearable I was still told it was muscular. After insisting they did blood tests and sent me to physio, I eventually paid private (£1250) about 15 years ago to have an MRI. That showed sacro inflammation but wasn't taken any further, even had an endeoscopy (camera inserted into my tummy) all to be told nothing wrong with me!

    Four years ago the swelling and fatigue, sacroilitis and other symptoms kicked in and sent me to rheumy, they x rayed and seen problem with sacro and said it was sero-negative arthritis, 18 months ago finally confirmed as Ankylosing Spondilitis!

    The years of wrong diagnosis when I was told to take ibrophen has now damaged my eyes so will get cataracts sooner, something else to look forward to!

    Anyway on a brighter note I now have great rheumy team and on meds that are helping. This is a great place with brill people to let of steam, have a laugh or get some support. Hope you enjoy being part of this forum and hope you get sorted soon as much as you can with this crap disease. Xx
  • dotty123
    dotty123 Member Posts: 122
    edited 30. Nov -1, 00:00
    This makes me so angry to read, we know our bodies and we know when things are not right and we are the ones that feel the pain.. and some bloody doc's say welcome to old age.

    This happened to me a few years ago, I went to the doctors as my right index knuckle was starting to look like a mountain ( still does ) it was so obvious that it looked different to my other fingers and he just sat there and said he couldn't see it.
    So I kept going back until I put my foot down and said now look another fingers is now odd.. eventually was sent to th Rheumy and was x-rayed and was told I got OA... good bye and get on with it. NOthing they can do ggrrrr
    But I kept on them and saw a surgeon but he said he couldn't operate on my knuckles as the nodules will grow back and it could end up worst.. So got to live with it. And to understand that I am at the beginning and things are most painful now and should settle....
    But I know the OA has spread to my hip, it doesn't happen everyday , but without warning it just goes and really hurts and I limp, then it goes as quick as it came on..

    Anyway , sorry I am rambling about myself .. this is your post.. sorry.. such a chatterbox

    Big hug hun, I am new to this and not very good at advise .. keep strong

  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Dont be sorry for being a chatterbox, keep it coming. x
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Hi Jules

    Sorry that you have had to go through so many years of problems. I have OA of the lumbar Spine and sciatica which also has the added benefit of having a slipped disc.

    I started going to the doctors in August last year and it took me 4 months for any doctor to listen to me. Eventually I saw a doctor who understood about my back problem and sent me for tests and I was diagnosed in February of this year with OA, sciatica and slipped disc. I was given a caudal epidural for my slipped disc in March and within 5 weeks I developed pain in my right hand, shoulder, knee and soles of both feet which has caused me a lot of pain. Unfortunately I have been back to the doctor and all he keeps saying is:
    1. Keep taking the tablets
    2. Talk to someone else (pain clinic or physio)
    3. Its because you dont do exercise and you are overwieght

    I am not impressed with this treatment but I would like to know how these doctors know how your body is feeling without actually being you.

    I am due to see the pain specialist on 22nd August so I will definitely be talking to them.

    I hope that you get the answers and the help that you need. I just want to say that if you dont get the answers you deserve then keep going back ancd back. Dont let them get away with anything. You and you alone know how you feel, we can all sympathise here because we suffer from some sort of Arthur but we dont truly know how you feel because we are all different and have different pain thresholds.

    Good Luck
  • jules44
    jules44 Member Posts: 26
    edited 30. Nov -1, 00:00
    Hi All,

    Many thanks for all of your input, I had to go to the docs with my daughter last Sat 30.07.11 as she to was being fobbed off Told the doc that she needs to get to the root of her back pain in order that it can be treated properly, she has had to have bllod tests and will go for an x-ray at the end of the week, the doc told her that if nothing showed up on x-ray to go back n ask to be referred for a MRI Scan. it took me to go with her as she had been refused an x-ray the day before...... and they say, we try to atch artheritis early in order to slow down the process!!!! its a joke

  • lavenderlady
    lavenderlady Member Posts: 409
    edited 30. Nov -1, 00:00
    I am amazed how many people have been fobbed off I must consider myself lucky my GP and my Rhumatologist, Surgeons and consultants have all been very good with me I had really bad back pain for years in fact I had a son who is now 22 and he was a big baby born so fast he broke my coccyx, it then healed but in the wrong position which is so painful , an xray and MRI showed the bottom on my back and L5 ( I think) is damaged and is called spondelothesis the bottom vertabra slipped and the one above and below closed stopping it clicking back,
    I was offered surgery but have decided not to yet, but its also complicated by the neuro thinking I had MS as my right arm part of my leg and back are all numb and have no real strength, which is SMA I've had so many tests done over the past 5 years I do feel lucky knowing whats wrong with me , I know all 19 xrays on my joints showed every joint was affected by sever OA along with sero negative, but am feeling so lucky as a friend I knew from school has just told me shes almost paralised in her legs by a surgeon who cut her nerves while doing a bladder op, shes also had breast cancer, big breath !! I'm so lucky poor girl, hope you all get the right diagnosis soon, keep on at them you know your own body, :smile:
  • woodbine
    woodbine Member Posts: 140
    edited 30. Nov -1, 00:00

    Yes - I've had similar problems. I've been having back pain for years - was diagnosed with lumbar AO about 15 yrs ago (when I was 27). The GP took a lot of convincing that I also had OA in my hands - this was more recently, about 6-7 yrs ago - despite the lump on my finger, and problems with my thumbs.
    Now I have a slightly different problem - I have developed painful elbows and shoulder, and often numbness in my little fingers, following a fall about 18 months ago. Although I'd never had these problems until the fall, and have had them consistently since, the GP insisted that it was OA! An x-ray showed no sign of oA, and a physio said that it sounds like something caused by a trapped nerve, but the GP was adamant, and also refused to send me to the pain clinic - once you have a diagnosis, seems everything is put down to OA!
    Anyway, I saw a different GP in May, and she immediately agreed to refer me to the pain clinic for a more thorough examination of my joints :grin:
    I'm going on Mon 15th Aug!
    It can take a long time to get anywhere with GPs - as someone else said the claim that early diagnosis is important is a bit of a joke - but it's certainly worth persisting!
  • Ilovemystaffie
    Ilovemystaffie Member Posts: 29
    edited 30. Nov -1, 00:00
    Welcome to an excellent forum with good people.

    It took 6 years to diagnose my Ankylosing spondylitis.From the age of 20 i suffered pains in my lower back\hips,which the doctor put down to my hobby of offroad motorcycling (motocross\scrambling).
    It wasn`t until I was diagnosed in A + E with Iritis (after two weeks of gp telling me it was conjunctivitis!) that they discovered that I had A S.
    "Don`t worry,you`ll have a stiff back and it will burn out by the time you are 40!" said the Doc in A+E.
    If only!
  • tonesp
    tonesp Member Posts: 844
    edited 30. Nov -1, 00:00
    I had to wait about 2 years for a diagnosis I thought it was Tendonitis as I had had a few bouts of it over the years Finally invested 20 Euros to see a private doctor sent me for an Xray and after that the ball started rolling :grin::grin::grin: