How is the type of ms deternined?

Hi all,

How do you know what type of ms you have? I have only been told that I have ms with active lesions on my brain. My neuro didn’t mention what type it was. She said that all the symptoms I’ve had for many years would account to the ms. I have just had a recent relapse confirmed although I think it was mild by some peoples experiences. In fact my ms nurse suspected it migh be a pseudo relapse. Now the neuro has confirmed it was in fact a relapse. How do they tell what it is? How do they determine a relapse and do you need to have a certain amount before they can put a type label on it?

My mum died a few years ago with complications due to her ms and she never seemed to get relapses, she just went downhill week by week. It was very distressing for us all and I am frightened that I have the same type. I can see the symptoms creeping up on me and I’m scared.

I have been diagnosed for just over 18months now, surely they should be able to tell?

Sorry if this sounds a bit dramatic, I’ve had a bit of a pants day at work and I am now going through a self pitying episode!!.

Suex

I am so confused, everything seems to be a grey area when you ask questions.

There are two main factors: relapses and progression. If someone has relapses, chances are they have RRMS (relapsing remitting MS). If someone doesn’t have relapses, but instead their symptoms gradually decline from the beginning, they have PPMS (primary progressive MS). About 50-60% of people with RRMS go onto to become SPMS. Some of these people will still have relapses, but I think most don’t. Someone with PRMS (progressive relapsing MS) has both relapses and progression from the beginning. The other main group is Benign. In theory this means someone who recovers very well from relapses and has only minor, if any, disability after 10-15 years. The problem with the Benign label is that most people only consider mobility issues as a measure of disability so it’s often not a true reflection of someone’s MS.

How to tell if something is a psuedo relapse or a real relapse generally means considering if there was anything that could have triggered it instead of your MS, e.g. an infection, virus, heat, etc. Take away the trigger and, in most cases, the psuedo relapse recovers. So I guess your neuro believes that your relapse didn’t coincide with any other possible trigger and so was a real one. (Btw, I said “in most cases” because a psuedo relapse can sometimes trigger a real one.)

You’ve had relapses, so you cannot have the same type of MS as your mum. Her MS sounds like it was quite severe too :frowning: This does NOT mean that yours will be: there have been studies of MS in families and there is no relationship between a parent’s and a child’s MS.

One of the main reasons that having a diagnosis that includes the type is important is that people with RRMS can get DMDs. So, if you have at least two “clinically significant” (i.e. disabling/debilitating/serious) relapses in two years, then you should be asking for something. Other than that, it doesn’t really make a lot of difference what type of MS someone has.

Hth. And I hope tomorrow is a better day for you :slight_smile:

Karen x

thanks for your response Val, and thankyou Karen for giving me some peace of mind. Yes, my mum was very severe, I saw her going from someone just like me to someone rigid in a wheel chair that couldn’t even remember the word hello, constantly dribbling she couldnt even hold her head up, she couldn’t move or open her hands and absolutely no conversation, she just smiled at me when she could. but i knew that inside she was still the same person. Loads of catheter problems etc and my dad who was her carer getting more frustrated and more angry with her sometimes looking as though he hated her. He was loyal to the end and did everything for her but I cant blame him, it was hell of a job for him. I am so so frightened that this is the route I am going to be taking. reading your post is very reassuring…Good to know there is no relationship in ms between parent and child…

thankyou…

Suex

I have pmd you.

Pip

Well peeps, Ive done my homework and had some excellent advice from above and I’m pleased to say I am in a better frame of mind about it all today, maybe I was just having a bad day yesterday but you know what? It’s amazing what another day brings!

I’m not going to dwell on the past, I realise now everyone is different and it’s onwards and upwards from now on. I’m starting LDN next month when my bloods come back and I’m raring to go! May not work for me but hey! nothing to lose, at least I’ve tried it!

Promise not to feel sorry for myself anymore! Just shows how this forum helps eh?

Suex

just take each day as it comes :slight_smile: the only plans i make rigidly are my apps. when ive made plans and im having a bad day i do cancel,but remake plans x

Sue,

Glad the advice you have got from this forum has helped- lts good to talk - have a moan - with like-minded folk.

l am pleased that you are going to start on LDN - it helps well with bladder control as well as just making you feel more positive - and more able to cope with ms symptoms. lt no cure - as you know - but it certainly makes life easier. And if you do decide to try one of the DMD’s - you can also keep taking the LDN.

l have had ms for 30yrs - and mine has been SPMS all this time - so its with me all the time. But in the last 5yrs since taking ldn - My MS has not progressed - and my fatigue lessened. LDN is the only option - so far - for me. And l take Sativex for muscle spasticity.

F.

I think the short answer is they just make a guess, based on the frequency of your past symptoms.

I wouldn’t put too much worth in the diagnosis of type if I were you. It’s something that could easily turn out to be wrong and they could simply reclassify you at any point.

What really matters is what medication and support you recieve and as far as I am aware, it pretty much the same.