Forum

ADEM?

Hi everyone. I started with eye problems in 2010, where i had palsy of both 6th and 4th nerves in my right eye. Had an MRI done which showed a lesion. I had ongoing other health problems, yet nothing was strung together until this incident. My Neuro said MS, and a wait and see, followed by a LP and more follow up imaging. LP was normal. I am still battered with problems daily, and my muscle spasms are getting worse. Baclofen isn’t working as good as it used to. Now… My nuero has told me apart from telling me it could of just been CIS, he now thinks it’s ADEM. From what i have read, ADEM is mean’t to go within a year? It’s now been over two years and i STILL have ALOT of problems. My question is. Does anyone know about this and if it just disappears or has anyone gone on to develop MS from this?

It can be very tricky to tell the difference between ADEM and CIS, but the fact that your LP was negative swings the balance towards ADEM a bit. As far as I know, symptoms from both ADEM and CIS can act very similarly too, going into remission entirely, staying the same ongoing or somewhere in between.

The one thing that does not happen with ADEM is the worsening of symptoms. ADEM, by definition, is a one-off: it does not lead to anything else.

CIS is also a one-off, but there is at least a 50% chance of a second episode, in which case people with CIS can have worsening symptoms and/or further attacks (and therefore MS).

So, can someone develop MS from ADEM? No, they can’t. But it is possible to develop MS from CIS which has been wrongly diagnosed as ADEM. (And this does happen.)

The main test of ADEM vs MS/CIS is MRI: ADEM lesions tend to reduce in number with time whereas MS lesions increase in number. So, the way to be more confident about your diagnosis is to have another MRI. New lesions would mean that it is not ADEM.

Either way, it would be sensible to talk to your GP about your baclofen dose - we can become tolerant to drugs so that they become less effective over time - an increase or a change to something new may help your spasms.

Hth!

Karen x

Thank you so much for your reply Karen :slight_smile:

Hello

I am recovering from Adem. I had adem from May this year, I had it from May this year and learnt to walk and talk again in 7 weeks but my congnitive side took a while to come back. My neurologist stated that if i had any symptoms again it would be more than likely MS not ADEM. I do get very tired still but I think thats the medication, even tho I struggle to sleep. I dont think yours is ADEM, you dont have the symptoms for it. 1 in 8 million adultst get ADEM and usually children under 10.

Do you find youreself vomitting often? that was one of the symptoms of my ADEM. ADEM usually does go just upto s year and is very quick, I went downhill very quickly once admitted to hospital with ADEM, dont remember much of getting hospitalised but MS usually takes a while to get worse (My teacher when I was at school developed MS and that was over 8 years ago now and he is still walking now with a stick but still walking and he is still speaking).

Any questions dont hesitate to ask.

Regards

Vicky