joolzmac 20/03/17
Last reply 11 months ago
Rant alert

I was or my mum was completing DVLA form so I called where I go in Glasgow for appointments! I thought after being diagnosed end of January seen ms nurse on 21 February I would see neurologist in April knew March was out question!
So I called today to find out neurologist name and when my appointment was for to let DVLA know fs fs the woman told me 23 May is my next appointment with ms nurse no neurologist appointment wtf!! Beyond raging I not doing well can’t walk without walking frame I emailed her to say I can’t go on like this !! No meds yet!!

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stumbler
11 months ago

@joolzmac , it look like you may have “fallen through the cracks”!

Apart from chasing your MS Nurse, you could also try the Neurologist’s Secretary. If both those fail, contact the hospital’s PALS team for assistance.


joolzmac
11 months ago

Ok thanks


stumbler
11 months ago

@joolzmac , be assertive, but always be polite. 😉


joolzmac
11 months ago

Of course x


lilbird
11 months ago

… but always Assertive!!! 😉


joolzmac
11 months ago

Ms nurse got back to me asked dob she will chase up and get back to me tomorrow x


stumbler
11 months ago

Sometimes, we have to push to get things moving. @joolzmac . 😉


californiadreamin
11 months ago

through this whole process for us, regardless of the skill of the various dr’s we have found we have needed to advocate for ourselves. Always keeping asking. This is not a car maintainence thing that can just be deferred but your health. At the same time dont get to frustrated. Processes seems slow and complicated universally around the world. Even if you get a great dr that gives you some advice, do your own research on the internet. Know the risks and what to look out for so you arent surprised. Ask for extra blood tests even if you dont need them now so you have a baseline for the future. Get a second opinion from another Dr.

So my advice would be given how hard appointments are to come by, read as much as you can upfront so you make the most of each appointment.


cocofloyd1
11 months ago

Hi @joolzmac
My neurologist works in Glasgow and Lanarkshire I was diagnosed in October and I’m due to see him again in April. Still not on any meds either. My understanding is every 6months to a year is normal appointment times. However if your still relapsing as others have said contact neurologist secretary/ms nurse and chase up appointment. It’s horrible waiting and I totally understand where your coming from, it’s like you just want to get something done/help with this horrible condition. Take Care x


californiadreamin
11 months ago

we are in the US, but the expectation (at least here) should be that if you have a reason for a medication change (or to start one) this wouldnt be considred a normal checkup but a reason to see the neuro right away.


joolzmac
11 months ago

Just got email from ms nurse – I am on urgent waiting list – I have checked with waiting times. You are on urgent list – will be five weeks wtf!!


stumbler
11 months ago

@joolzmac , five weeks is urgent in the Neurology world!

You could always talk to the Neuro’s secretary and offer to take any cancellations at short notice, if you can handle that,


joolzmac
11 months ago

Hi all I am getting admitted to neurology award x


stumbler
11 months ago

@joolzmac , that was a quick five weeks! 😉

I hope it goes well for you.


joolzmac
11 months ago

Yes they want me to see specialist as I have not improved at all.


stumbler
11 months ago

@joolzmac , they might prescribe intravenous steroids, to try and kick start your remission. Make sure you have some mints to hand as the steroids can leave you with a metallic taste.

Stay in touch.


joolzmac
11 months ago

Had them end of January 3 days worth yuk taste in mouth!! Feel I have got gradually worse, than when I came out of hospital in February!
X


stumbler
11 months ago

@joolzmac , well, take this opportunity to have a good rest. 😉


lilbird
11 months ago

Best of luck @joolzmac, glad you got a result, hope it all goes well 🙂


joolzmac
11 months ago

Thanks for comments x

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