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  1. #1
    Join Date
    Dec 2004
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    Up North
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    1,799

    Angry Well I finally got the verdict

    The verdict is that all the medicos haven't got a clue what is wrong with me, they call me a conundrum.
    One thing I do know is that I do not have MS.

    I haven't got any inflammatory markers but for some unknown reason, if they cut down on the prednisone my vision goes down dramatically.
    My eye specialist has no idea why the prednisone works but as long as it works, he is happy.
    I love that man, he is one of the few specialists who has never forgotten that it is a person he is seeing, not an illness or a symptom. I get rather testy when they stand around and discuss me as if I have suddenly gone invisible.

    The other doctors are unhappy because the dose is too high for long term use. I ended up telling them that you can put my body in a wheelchair but you cannot do that to my eyes and what's the good of being able to walk around if I cannot see where I am going? They didn't answer that one.


    I went for a nerve conduction test. They tested my legs but I don't get that result until I see the neurologist on 16 January, in the meantime I just have to live with the loss of sensation and pins and needles in my legs.
    They refused to test my arms because "they did 2 tests 5 years ago and they know what's wrong with me". Pity they never told me, all they told me was not to lean on my elbow when I sit at my desk.

    Apparently the 2 injuries I have had to my left shoulder and the fall down the steps, the fractured vertebrae, the trapped nerve and the bulging disks in the last 12 months are irrelevant and there is no reason why my neck and face has gone numb. Well that's according to the "doctor" who did the testing, he told me "that's clinical and has nothing to do with this testing."
    I have written myself a long letter setting down all the questions I have to ask the neurologist in January.
    Every day is better than yesterday

    Cheers
    SAISAY

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  3. #2
    Join Date
    Jun 2007
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    North Of The Boarder
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    Default

    Text book Quacks who are blinder than you could be without the meds.


    Hope a resolution is coming your way ASAP.

  4. #3
    Join Date
    Sep 2005
    Location
    Bendigo
    Age
    57
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    67

    Default

    Hi SAISAY,

    I have absolutely no idea of the background of your symptoms but a number of years ago I was struck with loss of sensation and pins and needles in my legs. It had many doctors stumped for a while.

    I would not be waiting as time can make a big difference to your final outcome in some cases, in the case of Transverse myelitis the sooner the diagnosis and treatment the better the chance of full recovery.

    My best move was seeking a second opinion after the first doctor told me to come back in a few weeks.

    Best of luck, Dave.

  5. #4
    Join Date
    Dec 2004
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    Up North
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    Default

    Thanks droog
    I am seeing another doctor tomorrow.
    This thing is driving me up the wall.
    Every day is better than yesterday

    Cheers
    SAISAY

  6. #5
    Join Date
    Aug 2004
    Location
    Sunbury, Victoria, Au.
    Posts
    1,113

    Default

    Quote Originally Posted by SAISAY View Post
    Thanks droog
    I am seeing another doctor tomorrow.
    This thing is driving me up the wall.
    Good move saisay! I hope there is something more positive from this opinion.
    Apart from your physical well being, they (the medicos) often give little consideration to your mental well-being.
    Russell (aka Mulgabill)
    "It is as it is"

  7. #6
    Join Date
    Feb 2009
    Location
    moonbi nsw Aus
    Age
    67
    Posts
    1,938

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    I am sorry to hear of your plight SAISAY.
    We are taught to regard doctors very highly because they are oh so much more clever than us.
    My wife and I have had some other than favourable dealings with them so I can sympathize with you. But you are not after sympathy you are after answer and aright one at that. we have had the run a round.
    My mother-in-law is 80, has a bad heart that gets her to hospital now and then. She went to see her heart specialist for a check up and he told her to come back for another checkup in 3 months. She asked the receptionist for an appointment for 3 months. No can't have one then booked out! So she asked for the next available one and the stupid receptionist tells her that they will be opening the appointment book for that month on such and such a day(weeks away). Can't make an appointment because you have to ring on the appropriate day to get in on that month. Long story short the see you in 3months ended up 6 months later. What a load of crap!!!

    I do hope you can have a comfortable time over Christmas and that you can get someone to sort you out and get you on the road to complete recovery
    Just do it!

    Kind regards Rod

  8. #7
    Join Date
    May 2011
    Location
    Murray Bridge SA
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    69
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    3,327

    Default Bloody Quacks.

    Hi Saisay, I sympathies with you on the pins and needles in the legs, I have a similar problem, I had faciotomies on my legs, and the nerves were severed, twelve years ago. I know how you feel, not getting a decent answer.
    The doctors keep practicing, ONE DAY, they might get it right, ONE DAY!!!!!!!!!!!!!!!
    Kryn

  9. #8
    Join Date
    Dec 2004
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    Up North
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    Angry

    Well, I went and saw the General Practitioner at the hospital, another fancy title for a medico.
    The reply?
    "I don't have a diagnosis so I can't do anything for you!!"
    1 hour waiting time and 5 minutes seeing the doctor.
    Great help (NOT) and waste of my time.
    Apparently I suffer from an unspecified medical condition and just have to keep on with the medication that works, even though they don't know why and when it stops working, try something else.
    Every day is better than yesterday

    Cheers
    SAISAY

  10. #9
    Join Date
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    Makes you wonder how they past exams right through school doesn't it.

  11. #10
    Join Date
    Aug 2008
    Location
    Normanhurst NSW 2076
    Age
    79
    Posts
    465

    Default woodworkers with disabilities.

    Hello Saisay,
    I am not a MD, but I had similar symptons, with resulted in a diagnosis of poly myalgia rheumatica and giant cell arteritis.
    The treatment for the giant cell arteritis was prednisone (& the PMR) . GCA affects the eyes and can cause blindness unless treated.
    The (2) blood markers for inflammation of this nature are CRP (C-reactive protein) and ESR (E sedimentation rate). I just mention all this to
    you in case it can be helpful and that you might wish to take these aspects up with the medicos. Take care, John M.

  12. #11
    Join Date
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    Up North
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    Quote Originally Posted by Drillit View Post
    Hello Saisay,
    I am not a MD, but I had similar symptons, with resulted in a diagnosis of poly myalgia rheumatica and giant cell arteritis.
    The treatment for the giant cell arteritis was prednisone (& the PMR) . GCA affects the eyes and can cause blindness unless treated.
    The (2) blood markers for inflammation of this nature are CRP (C-reactive protein) and ESR (E sedimentation rate). I just mention all this to
    you in case it can be helpful and that you might wish to take these aspects up with the medicos. Take care, John M.
    I was diagnosed with PMR and Lupus 3 years ago.
    Now they have changed their mind and tell me I PROBABLY do not have PMR and that the Lupus was PROBABLY shingles.
    Whatever it was it was extremely painful.
    Every day is better than yesterday

    Cheers
    SAISAY

  13. #12
    Join Date
    Aug 2004
    Location
    Sunbury, Victoria, Au.
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    1,113

    Default

    Quote Originally Posted by SAISAY View Post
    I was diagnosed with PMR and Lupus 3 years ago.
    Now they have changed their mind and tell me I PROBABLY do not have PMR and that the Lupus was PROBABLY shingles.
    Whatever it was it was extremely painful.
    SAISAY, all I have to say about the medicos is My sympathies to you, but don't let it get you too down.
    Russell (aka Mulgabill)
    "It is as it is"

  14. #13
    Join Date
    May 2011
    Location
    gippsland
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    815

    Default

    I understand your dilemma, the only real help we can get for our children is in the USA. Politics and ego's, seem to get in the way of some doctors being able to help.

  15. #14
    Join Date
    Dec 2004
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    Up North
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    You wouldn't believe what happened.
    I got so tired of stomping around like Herman Monster and having legs like fence poles.
    I had some old fluid tablets and in desperation I took one every morning for a week.
    I lost 5 kilo in that week and I actually have ankles again and can feel the bones in my feet.
    The continual pins and needles have diminished greatly as well, I can actually feel my hands again.
    The doc was horrified when I told her, as they interfere with my kidney problem but she relented and gave me some that are not quite as bad for my kidneys.
    Every doctor I saw commented about the puffiness but no-one suggested fluid tablets nor any solution to the problem at all.
    Makes you wonder what they teach them in doctor school
    Every day is better than yesterday

    Cheers
    SAISAY

  16. #15
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    Jun 2003
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    Quote Originally Posted by SAISAY View Post
    Every doctor I saw commented about the puffiness but no-one suggested fluid tablets nor any solution to the problem at all.
    Makes you wonder what they teach them in doctor school
    Even though our illnesses are totally different, I've got autoimmune hepatitis, I'm also on prednisone. One of the possible side effects of this medicine is "water retention leading to swollen legs and feet" so it's surprising that your doctors didn't comment about it.

    My doctors fully explained this medicine and again the hospital chemist explained it as well and even gave a Consumer medicine information sheet about this medicine. This info sheet also warns against taking diuretics as these medicines may be effected by it or may effect the prednisone.

    BTW these info sheets are available on line and it may be worth your while to look at them. I started of with 40 mg a day but am now down to 7.5 mg a day as the dosage of my other tablets increase. What dosage are you on.


    Peter.

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