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diane177432

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Posts posted by diane177432

  1. Hi Judy,

     

    The people I am seeing today are in the Genetics Endocrine Unit at Addenbrookes Hospital in Cambridge, UK. Their names are Dr Soo-Mi Park and Dr Helen Simpson. As I recently found out my step-brother was rushed to hospital with a tumour and has been diagnosed with cancer and also my Grandad adn Uncle on my Dad's side had brain tumours as well as my Nan on my side, we need to find out whether this will effect our son as well as my step-siblings off spring (half brother and sister on my fathers side). I cintacted my endocrine consultant Dr Mark Gurnell and he got me to contact my neurosurgeon Professor John Pickard and I git the referal. Fingers crossed, we all get some answers and can beat this.

     

    Best wishes,

     

    Diane

    xx

  2. Thanks for posting this Mary. I did some reserach over a year ago when I started to experience various symptoms. The first diagnosis I was given was optical neuritis and possible MS. Not convinced I looked into it further and found articles on pituitary appoplexy that described exactly what had happened to me. I suggested it to my endo who was initially not convinced until he spoke to my neurosurgeoen and then an official diagnosis of pituitary appoplexy was confirmed. My inital symptoms were severe headache resulting in partial loss of sight in my left eye (about 90%) - fortunately my sight came back over time but has not fully returned. Also at the time I suffered spasms in my ankles and legs which were uncontrollable (hence the concern that it could be MS).

     

    The odd thing that happened though with me is that my tumour enlarged and then collapsed into itself and started to shrink. Despite this I still suffered a reccurrance when I should have by all accounts been headed for a cure.

     

    The other odd thing is what is happening with me now, its been another year since I was diagnosed with pituitary appoplexy and this week some of the symptoms I had back then have started to happen again - cramping in the ankles, painful headaches etc - I know I am cyclical but this is ridiculous, surely pit appoplexy can't cycle as well....can it?

     

    Diane

    x

  3. cushie-helper.gif

    • Diagnosed with Cushings Disease on 17th April 2004
    • Pituitary surgery: 21st September 2004
    • Recurrance of Cushings Disease confirmed on January 17th 2006
    • 2nd Pituitary surgery on 28th February 2006.
    • Currently on 20mg Hydrocortisone, 125mcg Thyroxine and insulin (as of June 2006)
    • Weaned to 15mg of hydrocortisone (as of July 2006)
    • Weaned to 10mg of hydrocortisone (as of August 2006); told that I could come off of it as I suppressed on my Dex test and synacthen tests were OK; however also advise that there was evidence of something there on the MRI and I have to have radiotherapy shortly.
    • Weaned to 5mg of hydrocortisone (as of September 2006)
    • Off the hydrocortisone (october 2006)...next stop Radiotherapy commencing November 14th 2006
    • Radiotherapy ended on 20/12/2006 (treatment was over 5 weeks) - I am taking 5mg of hydrocortisone until after the New Year and then trying to wean off again
    • Weaned off hydrocortisone - feeling great!!!! and back to work full-time for 8 wks and then part-time!!
    • Diagnosed unexpectedely with 'Optic neuritis' in April 2007 - put on methylpredinosolone for 1 week - sight has nearly returned in eye - more testing and more mysteries
    • started on 10mg hydrocortisone a day on April 26th - has made me feel much better so have a feeling the old pit is starting to dysfunction as a result of the radiotherapy...gggrrrr...
    • Saw endo in May 2007 - oestrogeon normal, thyroid normal, diabetes controlled - but low GH
    • 0ff the hydro...having lots of off days and put lots of weight back on
    • August 2007 - Cortisol at 600 plus - possible reoccurance but Dr's investigating the exact cause - all a mystery! so its testing for me
    • 27/9/07 - diagnosed with a 2nd reccurance
    • 8-12th October - week of investigations at hospital
    • Results of investigation to date: reccurrance of Cushings confirmed/ x3 benign possible tumours found on my lliver (MRI planned for 30th October to check) / cyst found on my left kidney / possible nodule on my adrenal / elevated cortisols
      • January 2008 - BLA on the cards - Cushings being managed with ketaconazole - have been hypoadrenal so taking small amount of dexamethasone too

    Updates of bios: http://www.cushings-help.com/diane.htm and http://www.cushings-help.com/dianej.htm

    What we call results, are beginnings - Ralph Waldo Emerson

    Life is a succession of lessons which must be lived to be understood - Helen Keller

  4. There are some really informative articles here Melissa - one in particular has been useful to me as it talks about if all else fails i.e. multiple transphenoidal surgeries, radiotherapy and bridging the gap in prescribing Cushings management medication - as I am at that place right now it was interesting reading that article even though it was upsetting looking at the statistics.

     

    Thanks for sharing this link!

     

    Diane

    x

  5. Hi Mary,

     

    I can't praise you enough for this wonderful site and I sing your praises and those of other people on this site to most Doctors that I meet here in the UK. If there is anything I can do here then I will. Hopefully one day some of us UK cushies can meet you all. Until then I'll keep posting and you have certainly given me some other ideas on the list. I always said once I had the op and was cured I wouldn't turn my back on other people suffering and that promise still stands.

     

    Love to you all.

     

    Diane

    x

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