Last reply 1 month ago
Advice/slight rant!

Hi all, hope everyone is doing ok
Slightly confusing situation here: i got diagnosed with RRMS in 2018. I had a brain and neck/spine MRI and my brain looked normal but i had 3 lesions on my C spine which accounted for my symptoms.
Fast forward to a few a weeks ago and my neuro sent me for another MRI to check on things since the last scan (2 years ago) but the scan only included my brain. Iv queried whether it should also have been on my spine since thats where my lesions are and my initial symptoms have got worse over the last year but the secretary is saying that he would have ordered it if he thought necessary. Im not really happy with that response as i think it may be an oversight on his part but after a few phone calls she did agree to query it with my neuro. This was 4 weeks ago and still no response and I chased it on Friday and was basically told not to chase anymore as they will contact me if necessary.
In the meantime, my scan results say that basically my brain appears ‘well preserved’ so no further action required and the brain lesion is unchanged since the last scan – which i was told was clear 2 years ago!
Im not sure where to go with this now, should i have my spine checked since thats where my main lesions were and who do i query the brain scan results with since the secretary is being funny about me phoning?
Sorry for the long rant, feel like iv just been left to it!

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bernadette
1 month ago

@becky suggest you contact PALS – patient advice and liason service – which will be listed on the hospital website. They are obliged to look into this for you and follow up. Don’t let it go.
Persist. Your entirely reasonable in your expectation.


stumbler
1 month ago

@beky , try discussing this with your MS Nurse and see if they can progress.

Or, as @bernadette suggests, go for the big guns. I’d try diplomacy first with your MS Nurse………


beky
1 month ago

Thanks @stumbler @bernadette
I thought about contacting the ms nurses but i hesitated as im worried that im just mithering when they are busy!
I might give them a try this week


bernadette
1 month ago

@becky, that’s part of their job so MS nurse first of course @stumbler is right, I didn’t even think of them 😉
Depends on your team really


p-j
1 month ago

Find a new Neurologist. Go through as many as you have to until you find one that makes you like your being handled the way you feel is right.


ralee
1 month ago

The MS team are there to look after you and help you with any enquiry you may have, big or small.

That is their primary job. Don’t worry about bothering them because you are the one who has been handed a shitty disease, not them.

A lot of people make up ‘stories’ in their head and talk themselves out of doing anything. Is my question stupid? Will they think i’m time wasting? Is it ok to ask that? Etc…

Just enquiry and it’ll make you feel better.

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