a rant, with questions

I had an appointment with my gp about my bladder results & it set me off into a tiswos. It feels like I’m struggling with my ms DX when I have to face up to it is doctor appointments.

Anyway I ended up messaging my nurse and saying that I was having a bad day regarding starting on the injections because my neruo has said I can start in them if I want. Anyway my first relapse was in 2005 & then not until 2012, which wouldn’t normally qualify for drugs but my neruo still said I could start in them (which my nurse pointed out, in a way that I shouldn’t worry unless I have another relaspe)

The only reason why I know something was wrong in 2012 was due to pins & needles, which I still can get.

But this year I’ve started to have problems with my bladder, a hit patch on my leg & I’m forgetting little things more often. How can this not be a relaspe? Do I have to wait for a medical profession to say that it is??

Plus how often do you have an MRI scan once you’ve DX?

Thanks for listening :slight_smile:


i’ve had an MRI everytime I’ve had a relapse after DX, so 5 times?? not sure how common this is tho

Hi minnie

I’ve had four mri’s the last one lead to a definite dx of ms.

I get pins and needles pretty much every day, and my memorey has gone so bad I have to write everythig down.

Neuro tells me in my case it’s not a relapse but ongoing symptoms.

Freckles xxx

I get pins & needles every day. Sometimes i get pins & needles just by the way I hold something, which is new. My memory is getting worse too.

The thing that I don’t understand is that how can they say that some new symptoms are ongoing rather than another relapse? My nurse & neuro both say they are going symptoms

I’ve had two MRI scans

I’ve had 2 mri’s in the 16 years since original diagnosis. Suppose there’s very rarely been any reason to carry out a scan …or they’re too expensive tor our CCG to recommend unless there’s absolutely no alternative ?

Even back in the early days when I was considered to have RRMS, it was always suggested that I wasn’t having ‘relapses’ - just experiencing ‘progression’ of the condition. Symptoms (…both fleeting and long-term) taking a long time to appear but not considered to be a new attack ?!!

Makes no difference to how things are now. Whether I got here via ‘relapses’ or ‘progression’ just doesn’t matter to me. I’m here now - one way or the other - so I simply try to cope with however I’m affected day by day!


I’ve had 3 x mri. First one was just brain and neck shame didn’t include rest of spine. Second MRI was of the brain and whole spine. Third was brain and whole spine. My first MRI was very delayed which was a shame.

After my first MRI I hd a large relapse. Then the MRI 8 months later showed more lesions. You could always ask your neuro for an MRI scan if your last one was a while ago. If you don’t ask you don’t get.

Never had another MRI since diagnosis - there’s no need, I know I’ve got it so another one can’t tell me anything new.

M m - I think your question highlights the mess the medics are in regarding the terminology used about m.s.

No one is quite sure how to define a ‘relapse’ or ‘remission’

And as for the concept of SPMS - aaaaaaaaaargh!

I’ve not had a MRI since diagnosis. Don’t see the point once you know, just deal with symptoms as they occur. I’m not sure about the relapse stuff, I’m primary progressive as you know. Although my Neuro did say I could have a relapse. my brain does not compute that lol, it’s confused enough :-/ Noreen x

Zetland I think you hit the nail on the head “aaaaaaaargh”!!!