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I got given a MS nurse today despite not having DX confirmed

Hi All.

Got a call today to say “I have been given MS nurse as my details have been handed over to them and just to give them a call”.

Is this the norm :?:

i got given an appontment to go see the ms nurse when i first got my DX but not before.

jms wrote:
i got given an appontment to go see the ms nurse when i first got my DX but not before.

Hi JMS.

Was thinking this was odd, but am new to this so was not sure if it happens a lot or not ? :?

Hopefully someone from here might be able to confirm if others without DX get MS nurse as well.

Hi Stephen
I am not diagnosed with MS, but have been diagnosed with Clinically Isolated Syndrome (got Optic Neuritis in March), however, I have lots of MS symptoms and lesions on an MRI I had in May. I asked my neuro by letter whether I could at least see the MS nurse as I was not getting any support and she gave me the contact details. I saw the MS nurse two weeks ago and explained I was experiencing terrible facial pain and she spoke to the neuro who has put me on Pregabalin, which I started taking yesterday. I was so thankful to have met with the nurse, as she was brilliant.

Ness46

Ness46 wrote:
Hi Stephen I am not diagnosed with MS, but have been diagnosed with Clinically Isolated Syndrome (got Optic Neuritis in March), however, I have lots of MS symptoms and lesions on an MRI I had in May. I asked my neuro by letter whether I could at least see the MS nurse as I was not getting any support and she gave me the contact details. I saw the MS nurse two weeks ago and explained I was experiencing terrible facial pain and she spoke to the neuro who has put me on Pregabalin, which I started taking yesterday. I was so thankful to have met with the nurse, as she was brilliant.

Ness46

Hi Ness.

Thanks for this reply as I can see this is pretty much the norm then.

Cheers.

Stephen.

Stephen-G wrote:
Hi All.

Got a call today to say “I have been given MS nurse as my details have been handed over to them and just to give them a call”.

Is this the norm :?:


Congratulations! I don’t have one, despite being diagnosed for over a year. It’s never even been suggested.

I got a number to ring, for the relapse clinic (I know they do have MS nurses there), and that was it.

So far (touch wood), I’ve never had to ring them. I suppose I’ve had a couple of minor relapses, but nothing I felt I required advice or treatment - so there didn’t seem a lot of point.

I believe nurses are occasionally allocated where diagnosis is merely “probable” (in contrast with not being allocated, even when it’s confirmed). But I don’t think there’s any hard and fast rule.

Tina

Hi Stephen,

I’ve had an MS nurse since I was first diagnosed with Clinically Isolated Syndrome. She had a really long chat with me at the time and told me that I should phone her if and when I developed any further symptoms so that I could be slotted back into the neuros list. This happened a year later and a few time since then and she has been really helpful! I have now been diagnosed with Recurrent Myelitis but because it is still a demylinating disease that has a probability of developing into MS I will stay under her and the MS clinic.

I think it does depend on your area though because there’s a real mix of services available depending on where you live.

Lynn
x

Cheers folk interesting replies especially Tina having a DX but no nurse , it just goes to show their is no UK criteria for MS and all the different regions do their own thing.

Stephen.

Hi, good! But it does seem to vary greatly throughut the country. Folk on here have reported a wide variance of what MS nurse support they get/don`t get.

I was given one and I still don`t have a definite dx.

She has been able to help in some ways and not in others.

Luck of the draw, eh?

luv Pollx