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help..prostatitis and arthritis..it rhymes 2...

kevinmorrowkevinmorrow Posts: 13
hi,
im a 40 year old male who has suffered from what doctors tell me is prostatitis since i was 17...23 years...i also have what they tell me is ibs and ive always suffered from a bad back...thing is i dont believe what they tell me and have always thought my prostate pain was nerve pain caused by my back...and a few years ago i tore the cartilage in my knee.

anyway..this year after begging my local gp surgery to send me for an mri scan of the lower spine...it took 3 appointments...i find out i got some damage...the first gp said a touch of arthritis and theres nothing they can do just medication and nothing to do with my prostate pain...i wasnt happy so went to see another gp who after i moaned and moaned and got upset decided to send me to a local specialist spine unit.
i arrived at the specialist and was asked if i have my mri notes..i didnt..i was only given a cd rom of my scan..i was told there was nothing they can do if i have no notes and that the specialist wasnt qualified enough to read the cd rom, they said i was booked in for physio and to come back in 4 months, i tried to ask questions but was interrupted ignored and hurried out...i did prostest!...now ive had to defer my prostate treatment for 4 months because they are waiting on the outcome of the spine specialist..i dont know what to do and i dont know what is wrong apart from looking at the cd and the internet...im a builder and i have no qualifications and claiming esa and have been turned down and now im appealing...i get headaches now and numbness in my face, scalp, back and penis, i look fit and healthy and my mobility is ok most of the time..i dunno what to do and any advice will help so much...

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh kevin, poor you, what a mess and a muddle. You certainly need a doctor - or some doctors - to listen to you, there is no doubt about that. The cartilage problem in your knee, well, did he say what form of arthritis? There are different types, affetcing different aspects of the joints: if you have osteoarthritis, for example, there isn't much to be done in the way of drugs, it is a case of gentle exercise and painkillers, but as for the rest of your problems - well, I don't know what to suggest. Is there a PALS service at your hospital? This stands for - damn, I can't remember, it might be Patients Advocay and Liaison Service! - but they liaise between patients and doctors when there are difficulties between the two. The specialist should have been able to understand the CDrom, would that be so very different from a written report or pictures? I dunno, I am not a doc, but that does seem ludicrous to me. I think you need to find out if there is some organisation that can offer support, perhaps even send someone with you to future appointments for moral support and to help you stand your ground. I am sorry, that is all I can think of. I hope the helpline people can come up with something for you. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    hi, thanks for your reply, i did go to my gp surgery to ask why my mri notes had not been sent and at first was made out to be a liar, then told that if they didnt receive my notes they would have cancelled the appointment, i now have a copy of my notes and i have a loss of lumbar lordosis, lumbar vertebral body heights, lower thoracic and lumbar discs desiccated, anterior vertebral body osteophytes at L1-L2 AND L4-L5 with fatty endplate changes, L4-L5 posterior annular fissuring and minor bulging with facetal changes, L5-S1 small posterocentral prostrusion and a minor bulge, i have an email for my pals but it says its just for passing on messages to patients
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Well, I am not a doctor and I have no idea about your health but that all sounds pretty serious to me! I am just a forum member and I have psoriatic arthritis, which is a different beast to your version. You do need someone to listen to you: I think that PALS does more than just pass on messages, it may well be worth your while contacting them direct and ask them what else they do. I used my service when I had a complaint about my rheumatology department and they were very helpful. It could be an answer for you - if I have any other bright ideas I will get back to you. I promise I will keep thinking! Take care, I hope you are as OK as you can be today, and I am sure the helpline people will answer you soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    ok thanks you dreamydaisey for your support
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I wish I could do more, but I can't! I hope someone else has an idea - I am sure the helpliners will reply as soon as they can. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • helpline_teamhelpline_team Posts: 1,967
    edited 30. Nov -1, 00:00
    Dear Kevin

    Thank you for your posting, I am sorry to hear of the pain and difficulties you are experiencing with the medical professionals this must be very frustrating for you. I am going to repeat Dreamdaisy suggestion of going to your local PALS (Patient Advice and Liaison Services) to speak to them directly regarding the treatment you have received from medical professionals, you can find your nearest PALS, by following this link: http://www.pals.nhs.uk/

    In regards to work, you may find it useful to read our ‘working with arthritis’ booklet:
    http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/WorkingbookletMay2010.pdf

    When appealing a benefit decision it is best to have a welfare benefit advisor, supporting you. To find out about appealing benefit decisions read our factsheet, ‘if you are unhappy with your decision regarding benefits’: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets/main_content/BenefitsappealfactsheetApril10.pdf

    I am afraid as we are not medically trained we cannot help with diagnoses, but if you are unhappy with the diagnoses you have been given it may be worth communicating with the medical professional why this diagnosis does not fit, and possibly seeking a second opinion.

    I would encourage you to give us a ring here on the helplines to talk this through in more detail.

    Best Wishes
    Adele
  • helpline_teamhelpline_team Posts: 1,967
    edited 30. Nov -1, 00:00
    Hi Kevin

    In addition to all that has been said I would like to invite you to give us a call. From all that you have written it is clear you have quite severe osteo arthritis in your back.

    It is also clear that there is are a lot of other issues you are faced with so with all this in mind it may help to talk things through to get some clarity on the way forward.

    Best wishes

    Simona
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hey! They answered (I knew they would, they always do) and they might be able to give you more help/info. This is a good thing, kevin, good luck and let us know what the outcomes are. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    thanks for the advice...i emailed pals yesterday and i am now waiting for a reply...
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I hope they get in touch soon and I hope they can help. My lot were very helpful to me when I fell out with a rheumatology nurse! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    thanks daisy..did you get my message?
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Yes, and I sent you an answer. Go into Your Messages, it should be lurking there. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    oh thats a shame, would be nice to see who has been of help, never mind eh
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    has anyone any idea how long pals take to reply as ive just had a letter from the spine surgery and it has really upset me
  • helpline_teamhelpline_team Posts: 1,967
    edited 30. Nov -1, 00:00
    Dear Kevin,

    PALS may well have a quality standard about how quickly they reply. It may vary from NHS Trusts, so you might check on their website. If you've not heard and you are concerned, you could ring them and find out what timescale they work to.

    all the best
    Guy
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    ok this is what i wrote to pals and the response underneath...

    hi,
    i wondered if you can help me, im a 40 year old male and ive suffered pain in my prostate area and had bowl/back problems since i was 17, ive been back and forth to my gp surgery and hospitals many times over the years and think i havnt had much in the way of help or advice, i always seem to be more confused after each appointment. i dont know where to start really as its such a mess so ill start with my last attempt at treatment.
    i recently requested to have an mri scan on my back, it didnt happen so i went back and the gp who i had requested it with had left, so i had to ask another gp to refer me. when the results of the scan came back i went to my gp surgery and was told i had a bit of arthritis and there was nothing they can do, just medication, and that it had nothing to do with my prostate/bowl problems. i didnt feel happy with this so i went back to see a different gp who said they will refer me to the specialist spine unit at silverthone medical centre, even though i did ask to be sent to whittington where i am being treated for my prostate/bowl problems.
    i arrived early for my appointment at the silverthorne medical centre and was told the doctor was late. at my appointment i was asked if i have had a scan done, i had the cd rom of the scan but told it was no good and it was the mri scan notes that were needed, i wasnt given any notes, the doctor informed me that they couldnt do anything with no notes and was not qualified enough to read the cd rom, i tried to ask questions but was interrupted constantly and feel that i was just hurried out with no answers, just physio and come back in four months, i still dont know what exactly is wrong or the cause and i have had to defer my prostate treatment as i was waiting to hear what the spine specialist had to say.
    i returned to my gp surgery who informed me they had sent the notes and that they would have cancelled the appointment if they had not received them, they also printed a copy for me to keep and give to all the specialists dealing with me. i would be grateful for any advice you could give me.

    kindest regards,

    kevin morrow.

    the response...

    Dear Kevin Marrow,

    Thank you for your email, I am sorry to hear the concerns that you raise,

    It is unclear from your email what advice you want from the PALS Service. Please could you provide me with the information that you require, so that I can give you advise you appropriately.

    If you need any further information, please do not hesitate to contact me.

    Kind Regards
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I've sent you a PM. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    i pm'd you back lol
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    this was my reply...


    hi,
    thanks for your reply, just to let you know im not a long green vegetable, its morrow not marrow lol. my concern is the way i was dealt with at my last hospital appointment, i feel i was not given the opportunity to express my concerns or to discuss what is wrong with me properly, i did express this at my appointment, i even asked the doctor to slow down because i was not given a chance to finish questions that was asked of me. can you advise me on how to redress this please,

    kindest regards,

    kevin MORROW.
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    my reply...im still a long green veggy!!!

    Dear Kevin Marrow,

    Thank you for getting back to me.

    Silverthorn Health Centre has two orthopaedic clinics, one is an NHS Waltham Forest clinic the other is a Whipps Cross Clinic. In order for me to be able to take your concerns forward and assist you in getting some of your questions answered, please could you tell me what the specialist’s orthopaedic consultants name was?

    If you need any further information, please do not hesitate to contact me.

    Kind Regards
  • kevinmorrowkevinmorrow Posts: 13
    edited 30. Nov -1, 00:00
    are these people jokers or what...ive already complained about them getting my name wrong yet they carry on doing it...do they actually read my mail...?...i dont trust them already...
  • helpline_teamhelpline_team Posts: 1,967
    edited 30. Nov -1, 00:00
    Dear Kevin

    It seems that your message is not getting across to PALS or your doctors. Perhaps it is time top change your way of communicating. Do you think you could just write a list of things of issues you want PALS to take up on your behalf rather than tell them the whole medical story?

    Perhaps using I messages with them and your doctors may also help. I.e
    'Doctor I would like you to refer me to...'
    'I would like you to look into ....

    It seems that the current situation is just making you more and more frustrated. If you want help with how to communicate your needs and concerns to them you are always free to give us a call.

    Simona
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