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Hi there - Hope you don't mind me whinging on the first day

donboondonboon Posts: 20
edited 9. Nov 2009, 10:18 in Say Hello Archive
Hi, I’m Dave
I’m a few days off being 61 and I’ve been suffering with pain since I was 40.
The experts, all of them, say it’s in my head; then contradict themselves, expertly.
When I was 19, I was serving in the RAF and told by their specialist I had severe arthritis in my neck. The pain continues and you get on with it but as other complications developed matters only got worse. Recently[TEXT DELETED] x-rayed my neck and said there was nothing wrong.
In 1992 I was diagnosed with Ankylosing Spondylitis. Given all the usual meds and suffered all the side effects including stomach bleeding and IBS. Since then, my eldest daughter has been diagnosed with severe Fibromyalgia and my sister and my mother. [TEXT DELETED] say I don’t have that either.
The specialist can’t give me anything else due to adverse reactions so I’m limited to a cocktail of painkillers.
Added to that, in 1992 I began complaining of severe chest pains after a 140 mph head on collision. I was told, after full examination there was nothing wrong, it must be muscoskeletal pain from my back problem, they said. Wasn’t I told I don’t get pain, it’s all in my head?
The pains became excruciating, in and out of A&E, still nothing wrong they said. In December last year, 22nd to be precise, the cardiology consultant finally gave up and said there was test that would prove he was right. I had an angiogram and he came to us with great sadness, I owe you an apology; you should have been dead by now but by some miracle you’ve hung on. Yes the pain was real and it was telling me that two of my arteries were 90% and one was 75% blocked. Fortunately I hadn’t had a heart attack. Having realised his mistake he got me into the London Heart hospital three weeks later for an urgent triple by-pass. Again [TEXT DELETED].

After 12 years of complaining about chronic back pain and legs collapsing I managed to persuade my GP to get me a second opinion at the[TEXT DELETED]. Immediately they noticed a problem and put me in for an MRI on the lower back. It revealed severe osteoarthritis at the L5/S1 with root canal narrowing and OA in the left hip and pelvis. Could this be the cause of all my pain and legs collapsing?
NO, the neurologist said, without so much as a single test. He has ruled the problem still lies with my brain and in addition to reading on the subject further he now suggests I take an anti epileptic drug that’s being trialled. Ever get the feeling you’re part of a wider experiment?

To make matters worse, I received DLA for over twelve years on higher rate mobility and middle rate care until June this year. It was not renewed because according to the DWP I have been cured and my medical records do not support my claim.

Despite the triple by-pass which has left me with further severe heart complications such as a damaged thyroid and severely complicated atrial fibrillation I don’t recall being cured of anything.

I’m on a cocktail of drugs that can damage my liver and destroy my thyroid, turns my body ice cold and makes me pass out if I try to exert and now they want me to take an epilepsy drug to cloud my mind even further.

I would have thought my condition was proven and beyond doubt so am I missing the point somewhere or is this the normal way to treat people? Has anyone else been subjected to continual maltreatment and then had their DLA stopped?

Incidentally, thanks’ for giving me the space and place to complain. I’m hoping someone can tell me where I’m going wrong.

[Hi Donboon,
I've had to removed references to a specific hospital. I appreciate that you've had a bad experience, but Arthritis Care could be liable for such opinions expressed on the forum.
All the best,
Moderator(T)]

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Dave

    Welcome to the forum. You have every right to whinge and
    "throw your toys about". How totally frustrating for you. There have been some stories on here of how people have been treated but this one practically beats the lot of them. I would suggest that you copy and paste this postomg on to the Living with Arthritis Forum. I think you would get more replies on that zone because more peeps log on to that one and the Chit Chat zone than this one.

    I do hope you will join in with us on the forum.

    Look after yourself,

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • donboondonboon Posts: 20
    edited 30. Nov -1, 00:00
    Hi Elna,
    Thanks for the welcome.
    I don't suppose it would hurt to post it onto the main forum. As a newbee I didn't know how it might be taken so I thought bring everyone up to speed in the intro.
    As you say, just cut & paste.
    I'll do that

    See you around
  • suzstersuzster Posts: 1,328
    edited 30. Nov -1, 00:00
    welcome dave, sorry to hear you've had a tough time.
    i to was told for many years the pain in my hip was in my head, eventually a very good gp pushed for me to be seen by a rheumatologist and thankfully i was diagnosed with RA and treatment is ongoing.
    so yes, these medical people get it wrong, alot!
    hopefully soon things will improve and i'm sure others here can help you more.
    sue
  • donboondonboon Posts: 20
    edited 30. Nov -1, 00:00
    Thanks for the welcome Sue. I'm not sure things will ever get better especially with the NHS but whilst forums such as these continue to pump out cases of hardship and maltreatment others will have the information and hopefully the support to get things changed and improved.
    I'm trusting this organisation can do that
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