Anyone else have an undiagnosed illness?

edited 30 November -1 at 1:00AM in Disability Money Matters
45 replies 5.5K views
Guapa1Guapa1 Forumite
890 Posts
edited 30 November -1 at 1:00AM in Disability Money Matters
Just wondering if there is anyone else who feels jealous of those who know what is wrong with them?

My back and neck pain have turned my world upside down. I haven't worked, have had to move back into my mums and have nights like tonight where I miscalculated my prescription and have no sleeping tablets to get me to sleep.

As it happened in an accident, whiplash is what I've been told and there has been no other investigation.

I've tried physio, acupuncture, chiropractor, osteopathy, hypnotherapy, hydrotherapy and yet, here I am.

I'm so fed up.
Getting there... A deal at a time. :T
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Replies

  • How long have you been like this?

    Perhaps now is the time to push for an MRI scan, seeing as you have tried many different things. I would make an appointment with your doctor and be quite firm and say you want to be refered on to hospital.

    I'm terrible with my prescription drugs always mis-calculating.

    Good luck

    TT
  • :rolleyes: i had acident at work ten yr ago.i hurt my back and neck. it got slowly worse.:eek: then i had mri after waiting 18 months.:rolleyes: it showed a bit of disc problem on 2 discs.:confused: ok many people have disc problem. but my leg and back started to give way??:confused: i ended up with black eyes, had to have a council bungalow and sell my home.:eek: then i started to limp. had xray, tendonitis of my achilles . but it hurt me too sit, stand for more than ten mins.:eek: was given soooo many tablets. had physio on back and then they noticed id got cervical spondolitis.:rolleyes: slowly my mobility got worse. then a new doc asked how my heel was???????he said i want you to be tested for a.s.? so off i went too the rhumi specialist.:T he said you have got so many points of pain. told him lots more. did some crosses where pain was on paper. ok. you have got fibromyelgia?? but im guna give you xray on your sacioliac joints and blood test. :j i realy dont think you have a.s? 6 weeks later a booklet and a letter arrive... living with ankylosing spondolitis. :eek: not even a call from my g.p.???:mad: in twelve months my body dont belong too me.:confused: the pain is worse, im so stiff, dont sleep, all my joints are so stiff. so it took me 9 yrs to find out what is wrong. and i only found 2 weeks ago by looking at my records that iv got scoleosis in my sacrioliac joints.:eek: so i can understand you.;) i used to feel like a fraud and a whinger. its better to whats wrong know why you feel so much pain and illness. at least then you can look it up and understand it.:j
  • ment to say that with fibro you do forget many things.please ask doc about that???accident started mine. good look hun..
  • Guapa1Guapa1 Forumite
    890 Posts
    Thanks for replying.
    While yesterday I went to the doctors and promptly burst into tears. I could hardly walk, and told him that with no painkillers, nothing has changed. I also had a the award letter I got when I went to tribunal for a benefit.
    It said I needed further investigation.
    So he has put my name down for an mri and sent for loads of blood tests including the one for AS.

    I know this is going to sound really odd, but I'm really hoping they'll find something.
    There has to be an explanation, there just has to be!
    Getting there... A deal at a time. :T
  • Guapa1 wrote: »
    Thanks for replying.
    While yesterday I went to the doctors and promptly burst into tears. I could hardly walk, and told him that with no painkillers, nothing has changed. I also had a the award letter I got when I went to tribunal for a benefit.
    It said I needed further investigation.
    So he has put my name down for an mri and sent for loads of blood tests including the one for AS.

    I know this is going to sound really odd, but I'm really hoping they'll find something.
    There has to be an explanation, there just has to be!

    Thats really good that your doctor has started to do further tests. I understand totally where your coming from, when i went for my 1st MRI I was the same in a way, mixed emotions, you want them to find something, however you do not want the pain.

    I wish you all the best
  • code-a-holiccode-a-holic Forumite
    1.4K Posts
    ✭✭✭
    I have a very simmilar tale.
    Car accident 6 years ago. cause of my problems seems to be undiagnosed severe whiplash and torn rotator cuff in right shoulder.
    Which left ignored, i shrugged off the pain as aches from looking after a newborn baby rather than directly the accident. I worked at a computer. Within 2 years i couldnt ignore that i was loosing mobility in my right shoulder but docs wouldnt listen. Within 4 years, no part of my body is without a problem. I see a chiropractor privately and she has been the biggest help. Fibromyalgia has been diagnosed. muscle weakness is my biggest problem leaving joints, bones and anything else to move around as they please.
    Its been 3 years since a MRI was meant to have been booked. Im still fighting for it, but it seems there is a consultant in the hospital that repeatedly takes me off the list. He has told me before i have a mental illness. What a joke!
    I have botox injections in to my right shoulder from the pain clinic which wear off within 4-6 weeks rather than last 6 months- 1year so i cant understand why im getting brick walls instead of investigation. Could have saved the NHS not to mention DLA a lot of money if we could have found the cause and treated years ago.

    Feel like i have hijacked your thread - but point is im another without a specific cause/illness!
  • Crazy_JamieCrazy_Jamie Forumite
    2.2K Posts
    Part of the Furniture 1,000 Posts Combo Breaker
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    Guapa1 wrote: »
    Thanks for replying.
    While yesterday I went to the doctors and promptly burst into tears. I could hardly walk, and told him that with no painkillers, nothing has changed. I also had a the award letter I got when I went to tribunal for a benefit.
    It said I needed further investigation.
    So he has put my name down for an mri and sent for loads of blood tests including the one for AS.

    I know this is going to sound really odd, but I'm really hoping they'll find something.
    There has to be an explanation, there just has to be!
    You say that this was as a result of an accident and you have a solicitor. Is this therefore a personal injury claim? If so, how long ago did it happen and have you had a medical examination organised by the solicitor?
    "MIND IF I USE YOUR PHONE? IF WORD GETS OUT THAT
    I'M MISSING FIVE HUNDRED GIRLS WILL KILL THEMSELVES."
  • Guapa1Guapa1 Forumite
    890 Posts
    Code-a-holic,
    Doesn't it just make you mad? Why don't they listen? Surely we know our own bodies? Why don't they understand that fighting them saps the little energy that we have.

    Crazy Jamie
    I haven't seen a consultant yet, it's at the end of the month. I was all excited when the solicitor told me, as I thought it would mean an investigation, but he said it's just to write a report. :(
    It happened last January. I'm claiming my loss of earning back from work.
    Get blood test results on Wednesday.
    Getting there... A deal at a time. :T
  • Limana68Limana68 Forumite
    486 Posts
    HIya
    I know exactly how you are feeling, my husband has as yet an undiagnosed neurological disorder. Its been going on since last Sept, hes had all sorts of tests etc and we are now waiting for genetic testing, which is a 6 mth wait ( Good old NHS) so its so frustrating when he is getting steadily worse, and we have no option but to wait, our lives on hold really. Our GP is great, the neurologist just so busy.
    I have had to change my hrs at work so I can be at home more to look after him and the kids, good job work have been so understanding or I would have to pack my job in.

    Its just make you feel so frustrated and you can not really make any plans for the future and having that diagnosis just puts a line under things dosn't it.
    Anyway good luck with everything, and keep us all posted.

    Li x
  • black_pawblack_paw Forumite
    1.8K Posts
    Part of the Furniture 1,000 Posts Photogenic Combo Breaker
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    have you got Fibromyalgia ? as you can get this many months after a accident, like complete body shock, i had accident at work , and went down hill afterwards , took 3 years before this came out , + cronic cervicak spondylosis as well. fingers crossed for you. i sat in doctors room in tears , saying not going until he salts it out, bingo all tests at hospital came through
    the truth is out there ... on these pages !!
    <3
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