Last reply 4 months ago
Newly diagnosed

but confused.
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?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
4 months ago

Hello @blagaman182, Really sorry you are going through this. I can’t see from your profile where you are. But it makes me angry that you and others get such potentially shattering news in a letter. It happens quite a bit, and you’re not able to ask questions, get a full explanation. I hope you can demand a follow up appointment as soon as possible. Obviously I’m not a doctor and don’t know your history and can’t comment or interpret. One thing I can say about MS though, is that it is progressive for everyone. But, to put it in context, so is life! I mean, when I got diagnosed 2 years ago, the MRIs also showed degeneration of spinal discs, potential arthritis developing in a hip etc etc. The terminology that has been used in your letter is cut and dry, and unbelievably stark. The most important thing really, is how you are feeling physically, and what you need by way of support. And to get an appointment with a consultant who will be able to take the time to explain everything and go through treatment options. By the way, have you had a lumbar puncture as part of all this? Stay strong, everyone on Shift will understand what you are going through, so stay connected. All the best x


stumbler
4 months ago

@blagaman182 , as far as I’m concerned, all variants of MS are progressive. It’s just that in some variants, i.e. Relapsing Remitting MS (RRMS), there are periods of recovery, although that recovery may not always be 100%.

Your MRI scan may indicate the possibility of Primary Progressive MS (PPMS), but this is normally viewed in conjunction with other factors, e.g. clinical history.

The following link is to a booklet on PPMS, which you may find useful :-

https://support.mstrust.org.uk/file/PPMS-A5-Booklet-Oct-2018-FINAL-WEB.pdf


blagaman182
4 months ago

That’s what’s confusing me. Because I have had periods of remission almost 5 years and also in the letter it states that he’s going to start me on disease modifying drugs which I didn’t think you could have in primary progressive? It’s so confusing to send a letter out with not even a appointment booked is digusting I suffer heavily from health anxiety and obviously this isn’t helping!


stumbler
4 months ago

@blagaman182 , yes, it is a confusing scenario. If Disease Modifying Therapies (DMTs) are being discussed, then you have to assume it’s RRMS. Your condition has progressed from when it was last considered, so yes, you do seem to have relapses with a period of remission.

Anyway, call up the Neuro’s secretary and refer to that letter. Just enquire when you are likely to get an appointment to discuss.


blagaman182
4 months ago

Cheers mate you’re always a great help. I rang them and my dr has put through for an urgent appointment so hopefully get seen soon.


lightning87
4 months ago

I would say it means it’s progressive as in showing signs of activity but not necessarily PPMS xx

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.