Last reply 6 years ago
Letting off steam!

Just need to rant!!!!!!!!!
Went to hospital today for 5th tysbari infusion – i only have funding for 7 infusions in total and next month i re-appeal to the PCT for further (hopefully permanent) funding which i am obviously nervous about as since starting tysabri i have been the most well that i have been for about 5 years and dread the thought of having to stop and possibly reverting back downhill again!
The nurse on the medical day unit (not an ms specialist nurse) forgot to take the necessary tests before hooking me up to the drip (until i reminded her) and she then proceeded to lecture me about the fact that i wouldn’t be on 6 months funding as that is ridiculous (tried explaining the situation and she basically said i was wrong and questioned why the hell i was on tysabri if i didn’t qualify via the normal route – that if active lesions were not showing on my mri scan i didn’t need tysabri (wrong again as the mri scan is not an infallible test which i again tried to explain to her that clinically i qualified all but for the mri scan result!) – i didn’t exactly make the decision lightly to have tysabri – after researching and mri scanning and making the appeal over an 18 month period and my Consultant is the one who really wanted me to start the treatment.

she continued on this vein for quite some time which has left me feeling rattled and upset – i keep trying to rationalise by saying she is not an ms specialist, she does not now my case history etc etc but it has really got to me – tried to explain how i am feeling to hubby who just shrugs it off…not sure why its got to me quite so much….ok rant over!! 🙁

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stumbler
6 years ago

Well done, Becks. Consider yourself absolved now.
She’s not worth it, is she?


loulou
6 years ago

Becks it strikes me that the only people qualified to give advice on MS and treatment are those who have actually got the bloody disease (god I hate that word disease) it’s a condition not a blasted disease!!!! yep Im in the same mood as you tonight Becks! xxx


stumbler
6 years ago

Come on, girls. Stress is not good for you…..

🙂


f3ng5hu1
6 years ago

Maybe ask her if she’d ‘rather be in pain or take meds’ if it was her in your shoes, if she says ‘be in pain’ perhaps kick her in the kneecaps.


Becks
6 years ago

i’d have to make sure i was sitting down first otherwise would fall over whilst kicking her – also much easier to look innocent and say my leg has spasmed and i couldn’t possibly be held responsible for my leg connecting with her backside at a rate of knots – ha ha – that image is very cathartic for my stress levels 🙂


f3ng5hu1
6 years ago

Yup, tell her you can’t be held responsible for ‘random uncontrollable violence’, that should shut her up.


Becks
6 years ago

not the best night’s sleep…but determined to say new day – forget yesterday!!! 😛 LouLou – hope you feeling brighter too – msg me if u wanna chat x x 🙂


f3ng5hu1
6 years ago

yay for positive enthused optimism!!

Maybe the nurse was having a a bad day too, it’s good to move on sometimes, good place to be.

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