MS – Eying up the Future

2 thoughts on “MS – Eying up the Future”

  1. Hi Claire, good to hear how things are going for you. I think the hardest thing is negotiating the clinics
    , appointments, and different “doctors”!!!!! And, like you say, being left in the lurch depending on your own investigations on google. As you know I have had ME/CFS for over 30 years and at the beginning of 2020 the neurological symptoms began to seriously impact me. As, through the whole journey, MS has never been properly discounted I began requesting to see a neurologist. By the end of the year I have been declined an appointment 3 times. On one occasion the neurologist wrote back suggesting I may have Primary Migraine Syndrome (????) and I should try propranolol (despite the fact I was already on a beta blocker for my heart). I have changed my GP and for now have decided on a lets wait and see approach this year as I just can’t be bothered with it all. I do of course have the option of going private ($500 first appointment) but still they have to have a GP referral, and apart from not having that kind of money to spare the thought of going through all my symptoms again under the scrutiny of a skeptical specialist putting me off completely, I am leaving that as a last resort. For now I am still walking and still driving and happy. Looking forward to March 2022 when I can “retire” with a bit more money coming in!!!!!

    1. I hear you! I spent a great deal of time and money before I was eventually diagnosed and came out of a lot of appointments feeling like a hypochondriac fool. I felt like writing to every single one of them after I was diagnosed!

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