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still no change

Discussion in 'Type 1 Diabetes' started by ham79, Mar 6, 2010.

  1. ham79

    ham79 · Well-Known Member

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    well the neuropathy ain't moving (pregablin, tramadol and paracetemol) I've lost more weight through it being to sore to eat (have to put on 3 stone) now the hot topic is a wheelchair to give my legs a break :shock: sill haven't seen the pain team :shock: my gp passes the buck to the clinic the clinic passes it straight back again and I run around on my crutches after them woo hoo
     
  2. catherinecherub

    catherinecherub · Guest

    Hi Ham,
    Sorry to hear that things are not improving for you. :( :(
    I think the time has come for you to write to your PCT. A young family man like yourself should be getting the best of help and it isn't good enough. The whole family are involved because you are unable to do the things that kids expect. :( We know that older people are discriminated against and that is not right either. Time to take these people to task and get things sorted.

    Had been thinking about you and wondering how you were getting on.

    Take care,

    Catherine.
     
  3. ham79

    ham79 · Well-Known Member

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    Thank you very much your posts are always very inspiring to me I'm changing your Id toCatherineangel.
     
  4. catherinecherub

    catherinecherub · Guest

    :lol: :lol: :lol: :lol: :lol: :lol: Not everyone would agree with that Ham. I did see a signature on another forum which said, "All cherubs are not angels". :lol: :lol:

    I really do think you should write to your PCT and your M.P. (Election coming nearer and they want to be seen as the good guys). C.A.B. are also another good one to get involved.

    Catherine.
     
  5. ham79

    ham79 · Well-Known Member

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    cheers very much
     
  6. ham79

    ham79 · Well-Known Member

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    dum dum dum tomorrow is wheelchair day get assessed and if it's a yes I'm stuffed. that means another 6 months to a year before phsyio will see me and my legs ain't going to be much cope after that long out of action :cry: :cry: :cry: :cry: :cry: :cry:
     
  7. Tara

    Tara · Member

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    Hi,
    I have just read your post and your symptoms sound a lot like mine were over 12 months ago. i was diagnosed with type 1 in December 2008. Unfortunately I was on holiday in India at the time and ended up in a coma for four days. I got the shock of my life when I woke up in intensive care!
    Anyway, shortly after returning to the UK I began to experience terrible pains mainly in my legs but also my arms. The pain was so bad that I couldn't do anything. Resting didn't help, exercise was impossible (before diagnosis I worked with racehorses and led an active lifestyle.) The doctors prescribed me tramadol, paracetemol, codeine, amytriptyline etc, all to no avail. After many phonecalls and visits to the diabetes centre I finally got to see my consultant. He said these were typical symptoms of neuropathy but that it was uncommon in newly diagnosed diabetics. He made an appointment for 3weeks time, at which point I said I couldnt go on like that for another 3weeks. I ended up being admitted to hospital and had numeroud tests. I also lost lots of weight, had no appetite and felt really ill whenever i did eat. I was put on pregablin but came off it as for some strange reason it made my blood pressure drop. I couldnt even sit up in bed without going faeint. I couldn't stand up straight and collapsed in the shower once. The nurses put this down to me having a panic attack! I have never had a panic attack and am certainly not afraid of the shower! One nurse also said I was having a tantrum! I'm 27years old now and do not have childish temper tantrums! I wish they could experience what I was going through just for a day, so that they might be more understanding.
    I eventually came out of hospital in March 2009, I was still very weak, my appetite was poor, the pain still persisted but I was on the mend. I am now working part time, my appetite has returned, I no longer have a racing heart rate and low blood pressure and the weight has returned. (I'd actually like to lose a bit now!)
    It has been a long, slow process and it was very frustrating as nobody could give me any answers or tell me if or when things would improve. I still have morphine sulphate tablets and oromorph on prescription but rarely need them.
    I guess the point of this post is to say don't give up, things will improve, but it might be a lengthy process. I would advise you to keep on at your doctor, consultant, diabetes team etc. It seems to be that unless you keep hammering on doors they wont be opened. If you go away quietly then you seem to get forgotten.
    I hope you see some improvement and get some answers very soon.
    Tara.
     
  8. ham79

    ham79 · Well-Known Member

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    Thank you so much for your post Tara it brought a tear to my eye it's the similarity of both diagnosis and symptoms. Thank you for the hope it's given me a big lift thank you
     
  9. catherinecherub

    catherinecherub · Guest

    Hi ham,
    I hope your fingers are sore from writing all those letters that I advised. You have to keep on keeping on as Tara says.

    Please look after yourself and let us know of any progress made with regard to your PCT.

    Catherine.
     
  10. ham79

    ham79 · Well-Known Member

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    getting there eating at least once a day but legs are getting worse the campaign has begun my wife even has people at her work (pr company) on it. Can't thank you and Tara enough these little lifts make all the difference
     
  11. janabelle

    janabelle · Well-Known Member

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    Ham, I know I've asked you before, but are you still taking Lantus?
    Tara, what insulin are you on?
    Jus
     
  12. ham79

    ham79 · Well-Known Member

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    I'm on novo rapid and lantus
    The pain of injecting the lantus has gone unless my stomach muscles are on guard duty(muscle spasm) then touching my stomach is agony.
    On the plus side I'm starting to form a six pack :lol:
     
  13. Tara

    Tara · Member

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    Hi Janabelle,
    I am currently on novorapid and levimir. BG levels are are bit erratic at the moment but usually due to my activity levels changing or me being naughty and eating something i really shouldn't! I'm a lot better than I was this time last year though. Thought I'd been given a death sentence when first diagnosed and developed the neuropathy etc, even wished I'd never woken up from the coma. I still wish none of it had ever happened but I'm getting back to normal now and I'm able to do more or less everything I did before. Diabetes is a damned inconvenience at best but it could be worse I suppose...
     
  14. ham79

    ham79 · Well-Known Member

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    well guess what "still no change" getting nothing except come back in 3 months :lol:
    or they said it they can deal with it :lol:
    or hmmm not sure :lol:
    or I'll chase that up :lol:
    so no pain team :lol:
    no occupational therapist :lol:
    no wheels :evil: no relief :evil: :evil: :twisted: :twisted: :twisted: :twisted:
    oh and no help from the government so £60 a week sick pay I'm done finished this is a nightmare and I'm done with it all till tomorrow when my boys wake up then it's brave faces and giggles :) now that feels better ta much
     
  15. janabelle

    janabelle · Well-Known Member

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    Ham,
    I'm pleading with you now, get off Lantus! What will it take for me to cconvince you?
    Analogue insulins, not just Lantus I've recently discovered, can cause all of the problems you're suffering. Goodness knows why, but they do. :(
    Get back to your doctor, and ask to change to animal insulin for a trial period to see if your health improves. Surely it''s worth a try, especially you haven't found any other explananation for your ailments.
    all the best
    Jus
     
  16. ham79

    ham79 · Well-Known Member

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    cheers J
    you got a deal thanks
     
  17. nannybarbara

    nannybarbara · Well-Known Member

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    Ham,

    Please, please take note of what Jus says! (The lady knows what she's talking about!) I did exactly that, and I'm now off analog insulin completely, and I'm pain free. I ditched the Lantus before Christmas, and there was a miniscule improvement, but I didn't get off humalog until February. Within 2/3 weeks the pain levels began to subside. Apart from a very slight residual ache in my left ankle and wrist (a bit stiff if I've been immobile for half an hour or so), I'm absolutely fine. It's the best move I could've made. It was well worth me throwing my teddy in the corner. :lol:

    I really hope you get resolution soon.

    Barbara
     
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