Not sure dr is right about ankylosing spondylitis

purpleunicorn
purpleunicorn Member Posts: 67
edited 29. Mar 2012, 17:27 in Living with Arthritis archive
Hi everyone

My GP has diagnosed Fibromyalgia, which I do agree with, but I asked him about ankylosing spondylitis as I have such severe pain in my lower back, and when I lie down it literally pins me to the bed with pain. He said it wasn't that. I asked how did he know and he said that my RF test was negative, which I knew. BUT isn't AS a sero negative condition? I mentioned the HLA B27 test and he said that is the same as RF??? He also said it couldn't be AS as my neck doesn't hurt and it doesn't really affect the lower back. Now, maybe I am completely mistaken but isn't that information all wrong? I know you can have AS in your neck but that is cervical isn't it? And I thought the HLA test was something seperate?

I do accept the fibro diagnosis as I have pain everywhere, but I do feel that there is something else going on as well. I have asked many times for a referral and been refused. Anyone have any ideas?

Thanks

Aly x

Also meant to say that the x rays I had were only of my hip and pelvis, which were clear. The physio said that I have very limited movement in the end of my spine...well from the waist downwards.

I am also having horrible pains in my feet, underneath them...bottom of heel and back of ankle but also the balls of feet and toes. I am convinced that something other that FM is involved.

Comments

  • Folara
    Folara Member Posts: 568
    edited 30. Nov -1, 00:00
    Hi Aly, sorry I can't help with your question but wanted to ask you how you got a diagnosis for fibromyalgia ? I have a great many of the symptoms and have been back and forth to my Dr but he says no I don't have it. I'm at a loss of what to do now.

    I'm sure someone will be along soon who can help and sorry again that I can't.

    Fols x
  • purpleunicorn
    purpleunicorn Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Fols

    My GP diagnosed the fibro. I'd been back and forth for blood tests, x rays etc and all were inconclusive. I went to him again and took him a pain map and literally lists of symptoms and when I mentioned that God awful fatigue he asked had I heard of fibromyalgia. The pain map is perfect as they can see at a glance that the pain is in all 4 quadrants, above and below the waist and the symptoms diary showed that it has been ongoing for at least 3 months. He then told me to go home, research it and see him in a week. I did that and he put me on amitryptiline and I have to go back in a month. Problem is he has left now so I fear the battle will begin again.

    What are your symptoms for fibro?

    X
  • Folara
    Folara Member Posts: 568
    edited 30. Nov -1, 00:00
    Thanks Aly, I don't want to hijack your thread too much.

    I have pain in my knees, hips, lower back, upper back, neck, sort of top of shoulders. I do have OA in knees, hips and lower back plus prolapsed disks in lower back but the pain is different somehow to that but I can't really say in what way. I have a loss of feeling in my left foot and pins and needles/numbness in both hands and right big toe. Again been put down to my back issues.

    I'm totally exhausted yet even on the Amitriptyline I still don't sleep well.

    I suffer from urine incontinence that they have blamed on my back and despite moaning to doc about it several times nothing is being done for it. I do have horrible bowel problems with either constipation or the other.

    Worse of all is my memory. I totally forget the names of people who ave been my friend for years but it's like my head has got all fogged up plus I sometimes get words kind of muddled. It's really embarrassing sometimes and extremely frustrating.

    I've suffered from anxiety and depression for a long time but I get so wound up sometimes that I am clenching my teeth so hard I've now got a jaw joint problem.

    I have told my Doc all the above but he says it's the Arthur and I'm just over stressed at the mo. I'm not convinced.

    Thanks so much for listening.

    Fols x
  • purpleunicorn
    purpleunicorn Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi fols

    How old is your doc? Apparently if they left med school before 1990 they are unlikely to be that well acquainted with fibro, whereas younger docs are more likely to recognise it.

    I also have tingling, mine affects my arm hand and fingers and the dr said it's neuropathic pain from the fibro. Can you change GPs? It is extremely possible that you can have fibro alongside other conditions.

    The urinary problem usually rings alarm bells with drs as it can be a sign of cauda equina (sp), a condition which needs attention.

    I have been a royal pain in the bum to my docs but I always say nobody knows our bodies like ourselves.

    Hope that helps

    Aly x
  • Folara
    Folara Member Posts: 568
    edited 30. Nov -1, 00:00
    Thanks Aly. You have been a big help. Funnily enough my Doc has just retired but the new one is pretty young and really nice to talk to so I am going to list things down and go see him I think.

    I was investigated for Cadia equina but they deemed it wasn't threatening and that was that, left me high and ummmm not so dry!

    Really sorry no one has actually answered your questions and I apologies again for stealing your post x

    Fols x
  • purpleunicorn
    purpleunicorn Member Posts: 67
    edited 30. Nov -1, 00:00
    Fols, no problem at all. I would suggest you print off a pain map and fill it in and take that to the dr. I got mine from Clare (cjhunter) on here and it really was a great help. She also has fibro and can tell you a lot more about it than me!

    Let me know how you get on

    Aly x
  • MrDJ
    MrDJ Member Posts: 273
    edited 30. Nov -1, 00:00
    just to throw a spanner in the works.

    Hi Aly
    my name is Jim and im a HLAB27 positive person :shock:
    you are correct,the Cervical Spine is the the neck area (picture below)
    even though i am hlab27 positive i have no symptoms in my spine or sacro illiac joints whatsoever. in the majority of patients it does start in the lower back SI Joints so if they havnt done xrays of the lower spine then i think they might do if you persist enough.
    we dont recommend people having xrays unless they really need them due to radiation dose but they have to sort you out and find where that pain is being generated from.

    WOW! hold on a minute :o
    i just re read your post "He also said it couldn't be AS as my neck doesn't hurt and it doesn't really affect the lower back".
    jeez, i nearly fell off my chair.
    you need to get back to your GP and asked or persist to be refered to a rhumatologist for a second opinion.
    ive got to add im not medically trained but have worked in a xray department for over 30 years and also have every type of arthritis out there.

    no one should have to put up with that much pain and GP's are across the board trained on everything but not specialists so i whould defo get on their case to be refered.

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  • purpleunicorn
    purpleunicorn Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Jim

    Glad you didn't completely fall off your chair!

    I'm going to ring up tomorrow to get another appt and ask again for a referral.

    I'm glad it wasn't just me thinking the doc was wrong.

    Take care

    Aly x