Last reply 2 months ago

So, as I’ve previously mentioned I’ve been diagnosed just over a month now. In Ireland, if you are put on an oral treatment (gilenya) you are issued a long term illness card which covers the cost – great! I filled in the form the day I was diagnosed, nothing arrived over two weeks later and my initial treatment day was close so I rang the local health office to get an update on my card- guess what? They never received the form from the neurologist. I contact the neurologists secretary to explain my first treatment day was coming up so would need to get my meds prior to this. She said the neurologist was on leave and she’d do the form and send it off- grand! 13 days later STILL NO CARD! The pharmacy gave me my gilenya as a good will gesture and on the promised of my card details. I called the local health office again today to see what the hold up was- still haven’t received the forms! 🙈 so right now I have the pharmacy calling me looking for the card details as they need to do their end of the month paperwork, local health office with no form to issue me a card and the neurologist and secretary don’t work on a Monday! To say I am stressed out right now is an understatement and I’m trying not to cause, hey! Stress doesn’t help! I am ready to bawl my eyes out with it all!!! *rant over!!*

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2 months ago

@melissa_larkin, as if diagnosis isn’t bad enough, having to be your advocate is so tiresome, but sadly necessary. The one thing to hang on to is that it’s teething problems, which will settle once everything is under way. But in the meantime, you have my sympathy and everyone else’s onhere who have been through the same thing! Grrrrrr 🙁

2 months ago

Rant all you like, that’s what we’re here for! We’ve all been through it, we all know what it feels like, and the twist is they’re treating ms ‘hard and fast’ but only if your face fits, 👏 To our wonderful NHS👹🥊

2 months ago

Hi @milisa_larkin
Feels good to throw your toys out the pram so you keep it up if it makes you feel better…..

Seems like you’ve done all the right things, but as per usual people have let you down big time.
Short of planting your backside in someone’s office and refusing to leave, not sure what you can do.
I’m sure someone will have a better plan in due course.

2 months ago

@melissa_larkin , the pharmacy is probably on your side, as they’ve potentially had to deal with this kind of thing from the Neuro before. Incompetence seems to be rife everywhere, costing goodness knows how much…….

Could the Pharmacy hassle the Neuro and keep you out of the loop?

But, you’ve got the Gilenya now, so try and relax and get on with your life. This problem will resolve in the fullness of time…..

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