Its taken 20+ to find out whats wrong.

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I was 21 when i first began getting backache and neck pain, went to the doctors and always got told it was a posture problem, exercise more, sit correctly ect. Ive suffered so much pain and discomfort, lost jobs, got depressed, the pain, stiffness got worse, i just did not know what way to turn or who to turn to. Everything i could have done i done to help myself, lost all my faith in the GPs at my local surgery. The last GP i went to see was a locum at my surgery, i was in agony, terrible pain, asked her if she would send me to the hospital for an xray on my neck/back because i knew there was something not right, she agreed to send me after telling me i was waisting her time, hospital time and my own time. Anyway results came back telling me i had posterior cervcal fusion, advanced sacrolitis, fuced facet joints, looks like i need to have a double hip replacement and the diagnosis is that i have advanced severe ankylosing spondylitis. Why ive posted this is because i dont want anyone else to have to suffer the way i have, we all know our own bodies better than anyone, keep pushing your doctor to get results, dont waste 20+ years of your life in pain and suffering.

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  • Posted

    Good on you for being persistant. I too have ankolysing spondyolithisis which was discovered after I had a fall. I still remember the first day I saw the specialist - he told me that I had two options - either have an operation or end up in a wheelchair. Some option eh! I've now got metal plates in my back and although I still have constant daily pain, at least I'm walking. My doctor has just put me on another pain killer which is working a treat. Hope your life style improves for you. Best of luck.
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  • Posted

    I have been an ankylosing spondylitis sufferer for40 +years and have worked up to being made redundant 3 years ago.Now I have little or no movement in my neck and curvature is well advanced in my spine.I also have copd. Just recently I had to attend a work capability assessment and was told that because I can stand for 2 minutes and walk 200 mtrs with the aid of walking stick or crutches that I am capable of work.Is this the new set standard for work capabilty.If so would someone please tell me where I can find a job which meets these criteria. Or is it another way for this government to falsify employment figures to gain brownie points.?
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  • Posted

    I am at my wits end. Im not saying I have Anylosing but I think it's a possibility. I 1st started getting problems with my lower back when I was 24 (I am now 29). I was told for 3 years I had sciatica. When I became pregnant in 2008 my back pain worsened to which I was told by pyshio to come back once my child was born as they don't like treating pregnant women. My daughter is now 3 and I am in agony every single day.

    I have constant lower back, buttock, groin, neck pain with pins and needles and cold water sensations everywhere. I have tried cortisone injections in my facet joints which didn't work at all. I got injections in my left hip joint and pubic bone which worked for 3 weeks then it all came back. A year and a half ago I got an xray which showed my sacroiliac joints were abnormally white to which my doc sent me for an MRI. The MRI showed no significant inflammation so he's kinda ignored me ever since.

    I don't sleep well. I get 3-4 hours of solid sleep every night but then toss and turn until it's time to get up or I have to get up with the pain. I struggle to do house work and look after my daughter properly and need help. The thing is the docs say they can't find anything wrong but yet refuse to scan me again. They also say it's in my head and I am getting so frustrated I am starting to doubt my own sanity! If any of this sounds familiar or if anyone has any advise for me I would greatly appreciate it. Thank you in advance x

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  • Posted

    Hello Hazel, I only got a diagnosis after paying to see a rheumy privately. She transferred me back onto the nhs straight away. I just payed for the initial consultation. I looked on the internet to find a cons with an interest in AS. If you are lucky you will find one in your area like I did, so NHS transfer was an option. She listened and acted. As far as I am aware it is possible to have AS in the early stages without showing on xray or scan. It is so frustrating that Drs are not clued up to this condition. Ignorance is no excuse when you are a Dr! I hope you find your answer.
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  • Posted

    This is just a update about the first post i put on here when i first found out i have Ankylosing spondylitis. Im finding life very difficult at the moment with my mobility and pain management, im having reqular physio appointments at my local hospital with are helping to some degree, im now on a morphine pactch for the pain which i take replace every seven days with a new one. Im also on a quite new drug called Anti-TFN Ebreil, its a weekly injection i have to give my self to help with the imflamation . It takes three months to get accepted to use this drug, you may like to speak to your hospital consultant if you are interested, at £250 a time its expensive but is a great help. I saw my consultant on the 8th and has told me that its time i go into hospital and have my right hip replaced and my left a few months time, Im still very angry that it has taken so long for the illness to be diagnosed but at least im now getting the help i need.
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  • Posted

    For anyone having problems with medications to take for AS, my Dr recently put me on Gabapentin. You have to apply or government funding after the first three months. I found it worked a treat but the only drawbacks I had was constipation and slight weight gain. I was mainly taking it because of the pain I was getting down one of my legs. I have since stopped taking this medication and as yet the pain hasn't returned. It may be worth a try for some of you. Regards, Hazel, New Zealand.
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