Last reply 1 year 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
1 year 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
1 year ago

Ok thanks


stumbler
1 year ago

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


joolzmac
1 year ago

Of course x


lilbird
1 year ago

… but always Assertive!!! 😉


joolzmac
1 year ago

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


stumbler
1 year ago

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

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
1 year 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

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
1 year 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
1 year 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
1 year ago

Hi all I am getting admitted to neurology award x


stumbler
1 year ago

@joolzmac , that was a quick five weeks! 😉

I hope it goes well for you.


joolzmac
1 year ago

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


stumbler
1 year 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
1 year 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
1 year ago

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


lilbird
1 year ago

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


joolzmac
1 year ago

Thanks for comments x

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