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Myasthenia Gravis

Discussion in 'Off-Topic Discussion' started by Fat Controller, Apr 30, 2017.

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  1. Fat Controller

    Fat Controller 'Cuddly' Scottish Admin! Staff Member

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    Over the past few weeks, I have been getting various tests and scans done, and have seen a few different medical professionals which has culminated today with me seeing a neurologist.

    In short, he is as convinced as he can be that I have Myasthenia Gravis, although some further tests are required to make certain. Whilst awaiting the results of the tests, he is going to write to my GP detailing what drugs and doses I will need, so that all he needs to do is tell the GP to start treatment once the diagnosis has been confirmed.

    This has been going on for many years without referral or diagnosis, and he was astounded that nobody has picked up on it before now - but the length of time involved is also his spur for wanting to get things done sooner rather than later.

    So, any knowledge, experience, opinion or just plain banter all gratefully received.
     
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      Fat Controller, Apr 30, 2017
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    • Phil A

      Phil A Guest

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      I just googled the symptoms FC, between the rum and you being Scottish i'm not surprised they missed them :snorky:

      Glad you got a diagnosis at last :phew:
      Doesn't surprise me either, spent most of my childhood in bed, sent to various chest clinics, x rayed, prodded and pumped full of antibiotics and opiates until about 11 years old when one of the doc realised it was just a cat and dog allergy :th scifD36:

      Liked this bit I read about your condition...

      :fingers crossed:
       
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        Phil A, Apr 30, 2017
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      • Fat Controller

        Fat Controller 'Cuddly' Scottish Admin! Staff Member

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        It doesn't look likely to get better on its own, not least given that it has been a steady deterioration over the past 15+ years, and appears to be bundled with at least one other condition; however, yes I am sort of glad to at least be making some headway in finding out just what the hell is going on with my body, and of course very relieved that it responds well to treatment.

        I have my good friends Mr Whyte and Mr MacKay with me this afternoon, then I can have a double excuse for being a bit poor on the old pins :biggrin:
         
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          Fat Controller, Apr 30, 2017
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        • CanadianLori

          CanadianLori Total Gardener

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          I also looked at the Mayo Clinic and other websites about this terrible sickness that has hit you. I'm glad that the diagnosis has been made and the next step are means to fight it. It upsets me to hear that it took so long for the doctors to make this diagnosis and I hear of this type of blunder happening often over here too. :mad:

          Now that there seems to be a specialist for every condition known to man, I know that you will have the experts helping you to kerb future deterioration.:blue thumb:

          I didn't read anything about rum being prohibited during treatment so it is nice to know that you can carry on with self medication. ;)

          I'll buy you a drink at the arms tonight :Wino:

          and here's a data stream hug :grphg:

          and a large dose of my good health :spinning:
           
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            CanadianLori, Apr 30, 2017
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          • Marley Farley

            Marley Farley Affable Admin! Staff Member

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            Marley Farley, Apr 30, 2017
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          • Fat Controller

            Fat Controller 'Cuddly' Scottish Admin! Staff Member

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            Really? Now that is odd, because I have had an aversion to dairy for years - I tell everyone at work to only give my tea a 'fright' with the milk and no more. Maybe my old body knows something I don't.
             
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              Fat Controller, Apr 30, 2017
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            • Marley Farley

              Marley Farley Affable Admin! Staff Member

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              It is surprising what a small change in diet can do for your health.. Try cutting out milk completely and try using coconut milk as it is good in hot or cold drinks too and very good totally dairy free.. ;)

              DONT USE SOYA THAT CAN CAUSE ANOTHER PROBLEM..x
               
              Marley Farley, Apr 30, 2017
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            • Fat Controller

              Fat Controller 'Cuddly' Scottish Admin! Staff Member

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              I quite often take my tea black, never drink milk on its own, and cannot stand anything soya based.

              Thankfully, there is no mention of alcohol in what I have read so far, so life is good :biggrin:
               
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                Fat Controller, Apr 30, 2017
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              • Sheal

                Sheal Total Gardener

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                I'm glad to hear the consultant seems to be on the right track now FC even though diagnosis has given you a knock back. It's treatable and hopefully now the constant pain you've been in for so long can be relieved. :grphg:
                 
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                  Sheal, May 1, 2017
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                • Fat Controller

                  Fat Controller 'Cuddly' Scottish Admin! Staff Member

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                  Well, an armful of the red stuff was given this morning, so hopefully that will hold the confirmation. I think I will feel a bit better when I know for sure.
                   
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                    Fat Controller, May 5, 2017
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                  • Marley Farley

                    Marley Farley Affable Admin! Staff Member

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                    Well I know not the nicest thing to have done but they can find out so much from bloods.. Fingers crossed for you.. :thumbsup:;)
                     
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                      Marley Farley, May 5, 2017
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                    • "M"

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                      Sorry to hear that you may have this, but, delighted to hear someone has put a name to what you have been experiencing so that progress can be made - must have been a worrying time for you and your family! :grphg:

                      No experience of it but I do know it affects our canine friends too.

                      Do as the Dr tells you :pathd::grphg:
                       
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                        "M", May 5, 2017
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                      • Fat Controller

                        Fat Controller 'Cuddly' Scottish Admin! Staff Member

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                        And another hospital appointment - this time for an EMG test. Anyone had one of these?
                         
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                          Fat Controller, May 15, 2017
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                        • Marley Farley

                          Marley Farley Affable Admin! Staff Member

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                          Hi FC no I haven't had one of those it is to see how well your muscles respond to the natural reflexes to work out strength I think.. zGood luck with it when do you go.? :SUNsmile:
                           
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                            Marley Farley, May 16, 2017
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                          • Fat Controller

                            Fat Controller 'Cuddly' Scottish Admin! Staff Member

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                            7th June, and apparently they can often tell you their findings at the time. Not looking forward to the needles....
                             
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                              Fat Controller, May 16, 2017
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