When I got ill this time last year I vomited very often and that’s why I thought it was a virus which it was anyways, was the neurovirus I caught on a hen do. Once I got admited and continued to be sick they put it down to anxiety with taking medication, once I got discharged the sickness stopped and only occasionally I at sickness and now I’m scared cos today I went to the shops with my brother in his car and I know his driving is crazy and I had eaten a sausage roll and we walked very fast back to his car and I got sick out of his window. And then again on the driveway at home. It just scared me that I have relapsed :frowning: as this time last ear was the start. Can ADEM happen twice?

ADEM can re-occur. But I would bet that a more likely scenario is the one I deal with - damaged nerves that still react to certain things in very unpleasant ways. 5.4 years out, I still can have episodes similar to the initial attack, but MRI's have always shown no new inflammation. My neurologist believes that every time I get sick whether it be from a cold or ingesting gluten (I have Celiacs disease), it triggers my immune system and causes flares along the damaged nerves.

I also experience the flares during pollen season. Perhaps that is what has triggered the nerve irritation that is causing the appearance of a relapse. In any case, the only way to really know is to have a repeat MRI done. I had many over the first several years, looking for possible relapses which my neurologist stated would move the diagnosis from ADEM to MS. None were found. I had another at the 5 year mark, just to be certain and it was again negative. There appears to be a higher risk of developing remitting-relapsing MS within those first 5 years following the first attack.

I hope you feel better soon, and definitely call your neurologist asap.



The doctors and research say you can only get it once, but I also am at one year. The thought is always in the back of my mind, too.


Lynn I worry all the time that it’s come back. Even if I hve a slight cold, makes it worse cos it was this time last year.

Me too...I believe stress is a component. My husband is a physician and is constantly telling me I need sleep, I tend to not get enough. A major factor in my improvement was taking better care of myself. I am actually healthier than I have been in years. Diet, vitamins and trying to control my stress (not always easy). When I am tired or stressed, the neurological symptoms in my hands tend to get worse. These are the symptoms that have not gone away.

I get so tired but can’t sleep to save my life :frowning:

Do you take anything for sleep? There are herbal products, so that you don't have to use medicines.

Haven taken anything to try and sleep. Think I should really. I’ve started back at work and so tired but can’t sleep :frowning:

You could try Valerian or Chamomile. You can look it up on google or bing.

I had some symptoms diagnosed as ADEM after 2 mri s and 2 lumbar punctures but some 7 months later and a second relapse I was diagnosed with MS....Look into it and good luck...

MS and ADEM have similar symptoms and MS is diagnosed by ruling out other conditions. I went through this whole thing too.


MS and ADEM are both demyelinating illnesses. The main distinction is ADEM is by definition a one time event. BUT it can be the initial intense onset of remitting-relapsing MS. Only time will tell which it is. The information I received is that the likelihood of MS occurring diminishes after 5 years with no new lesions. Only way to tell if you have new lesions or not when you have the recurring symptoms is with an MRI. I have nerve damage but no new lesions. Symptoms reappear whenever my immune system is challenged whether a from a cold or infected cut or eating gluten. I have had over 30 MRIs in the last 5 years. No new lesions. Therefore no MS.


Can you believe how complicating this all is?

I know Lynn so complicated, feel ok today and another thing this adem has done is make me a worrier grr .

You have to get used to it and enjoy co-existing with it whatever it is.
I got used to waking up with vertigo, back ache etc till the engine warms up.
Turning it into a drama no matter how dramatic and painful it may be does not help and makes others tired.
I live on a remote island 20 min by air to the civilized world and my source of life is when I fly to civilization once a month to get my drip of tysabri and meet other comrades as I call fellow patients and have a chat. Only they can understand.
Life could be hard but there are worse…

Vicky, if you are feeling stressed and anxious (for which I wouldn't blame you a bit), it may be useful to consider working with a professional. There are a variety of strategies that may be able to help you cope with the anxiety: CBT, breathing relaxation techniques, mindfulness, or meditation, even acupuncture or massage. I don't know enough about how anti-anxiety meds might affect ADEM to know whether they might be appropriate; talk to your doctor, of course, but it might also be useful to ask our members about that. I hope you can find a way to relieve the stress and get some sleep. Keep posting if it helps. Someday you will look back and say:"That was a rough time. I am so much better now."