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 
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.
Best,
Deborah
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
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
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
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.
Lynn
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.
Sigh.
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."