Newly diagnosed but confused.

New diagnosis and before diagnosis
1

Had my first neuro signs 5 years ago and went numb everywhere. Since then Iv had a bit of pain in legs and arms and some slight weakness. Had an mri few weeks back and got a confirmation letter this morning saying I have ‘chronic demyelination lesions in the white matter and probably a few new lesions as well. The lesion in the cervical spinal cord remains stable’ THOS MRI SCAN HAS REVEALED THAT YOUR CONDITION IS PROGRESSIVE’

Now this is the bit that scares me… are the saying I have progressive ms? Or just that because I haven’t been diagnosed that this has progressed to rrms and not a clinically isolated attack. Any ideas? Can they tell if it’s progressive just from an mri? Cheers

2

I must add that he said he’s going to start me on dmd and I didn’t think you could have these with the progressive type? I have come to terms over last few years o having rrms but now to possibly have the second type to me is a whole new kettle of fish.

3

better wait for results

4

Hi

Well, as you say, DMDs aren’t generally available for people with SPMS or PPMS. So, it sounds as though the neurologist is treating you as if you have RRMS.

And if you have new lesions in the brain, that is probably indicating that your MS is ‘active’, thus relapsing. So it might just be a poorly worded letter.

But, really, it’s a case of waiting for the appointment with the neurologist and asking for clarification.

Sue

5

Thanks for reply. I’m just confused as to how they can tell which form is ms it is just from lesions on the brain?

6

Some of the diagnosis is your history of relapse / recovery. If you’ve had some, even partial, recovery from relapses, then you’d probably be fairly safely diagnosed as RRMS. But even if you’ve had very little remission, the neurologist might prefer to call it RR in the first place anyway. The reason for that would be that you only qualify for DMDs if you are diagnosed with relapsing MS.

Also, if you had an MRI with ‘contrast dye’, new inflammation lights up as ‘enhancing’ lesions and tells the neurologist that your MS is ‘active’, ie relapsing.

With me, I was diagnosed with RR, and stayed like that for about 18+ years. From the very first relapse, I didn’t get complete remission, I soon forgot what feet without neurological damage felt like - but you soon adapt to sensory changes, and the nerves do a reasonable job of compensating for deficits. Eventually, about 2 or 3 years ago, my neurologist decided (together with me), that I’d transitioned to SP. This was mostly because I’d not had any real relapses for a long time, plus, I’d more or less run out of disease modifying drugs that didn’t give me crappy side effects.

Then this year I’ve had two definite relapses, and have had a) quite rapid and significant remission following a course of steroids, and b) an MRI with new ‘enhancing’ (aka showing current inflammation) lesions on my brain.

So I have a new label, that of relapsing progressive MS. And I’ve been offered a couple of DMDs. One of which I’ve had before and didn’t get side effects from (Copaxone) and the other which could give me side effects (Gilenya). Even though I stopped taking Copaxone more than 10 years ago because I thought it had stopped working, I’m going to start back on that for safety’s sake. If it doesn’t work, then I can try the more effective, but riskier (for me due to my stupid body’s reaction to drugs) Gilenya.

So you see, it’s a mixture of MRI plus experiential evidence that tells the neurologist what kind of MS you have. The labels to some extent can seem a bit meaningless. It’s time that will show what your MS is doing and how it’s behaving. In particular, the labels are ever changing if you fall into the RR/SP continuum (which it seems you do as you had earlier symptoms which remitted).

I hope that helps a bit. It is all a bit of a learning curve when you are first diagnosed. And an unnerving one at that.

Sue

7

Thanks Sue :slight_smile: yeah my history is that I had a relapse 5 years ago and then have more recently had pains in my arms and legs

8

Got to wait another 2 weeks for appointment! So frustrating everything points to RRMS as Iv read they can only give you a diagnosis of progressive if you’ve declined over 12 months? I certainly haven’t! I have slight pains in my arms from time to time and that’s it! So fingers crossed