So many questions

Hi There, i was diagnosed with MS in Januaray after a year of progressive symptoms of altered sensation and axtaia requring hospitalisation in Nov. I was treated with steroids and improved gradually, since then i have encountered the whole spectrum of human emotions! One thing i am asking for your help from is this, it was thought that my lesions might be malignent due to Head MRI showing increase in size of lesion and post gadolinium there was a linear enhancment around the periphery of this lesion. A follow up MRI 6 weeks later showed activity had stopped. I also had a Lumbar puncture which then ruled out malignancy but pointed to MS. So when this was my diagnosis my neuro and i were so happy to hear it wasn’t a tumor i didnt quite acknowledge the full implacations of an MS diagnosis. My neuro confirmed dx but i have not been told what type of MS i have? I was also refered to MS nurse but have not had any contact yet? So i am now 6 weeks in with no information and feeling like im back in limbo land even after dx. Anything useful any of you can share with me i would really aprecciate, feeling a bit lost.

Hello and welcome :slight_smile:

Did you want to know what the MRI speak meant? My take on it is that the lesion looked a bit like a bright ring on the scans done after you’d had the injection of gadolinium. These can be tricky to tell apart from tumours, and the fact that yours had grown clearly made this harder. (MS lesions can be ring shaped and grow too.) The term that is sometimes used for this kind of lesion is “tumefactive”, if the lesion is fairly large too (typically 2cm or larger). Unfortunately, having lots of these tends to point towards aggressive MS, but people who have just the one are not expected to do any worse than other people with MS. It sounds like you’re in the second category so please don’t panic if you google tumour-like or tumefactive lesions. Even those in the first category do very much better these days, thanks mainly to Tysabri (a disease modifying drug; DMD).

Telling what type of MS someone has can be tricky if they have a mix of symptoms. It is possible to have progressive relapsing MS, although this is a fairly uncommon diagnosis, and it is also possible to have relapsing remitting MS but to have lots of back to back relapses so it appears to be more of a progressive type. I guess you could fit in either of these categories? Ultimately, the only reason the type matters is if someone is eligible for DMDs - and that means they have to be having relapses.

It might be worthwhile giving your neuro’s secretary a call to chase up the appointment with the MS nurse. MS nurses can be a great source of info and they are the ones who sort out DMDs. In the meantime, this forum is a brilliant support.

In case no one else has told you, you need to tell the DVLA about your diagnosis (they generally put us on a 3 year, free renewable licence) and you should check your paperwork for anything that might have a critical health clause (e.g. your mortgage) - MS is a payable condition.

Karen x

Hi Karen

Thanks for your advice, much appreciated. I think my lesions were smaller than 2cm but hard to be sure as neuro is a bit relectunant to share the finer details, think he works on a need to know basis! I wonder if it’s possible to get a copy of my medical notes?? Spoke to my local MS nurse today and she has had no referal through, although the neuros office insist it was sent out 3 wks ago! Got to love NHS communication. My nurse will be visiting this week so hopefully i should have a better understanding of things soon (provided she recieves my referal beforehand!) Again thanks for replying just helps to know your not on your own.

Laura x