A number of you have mentioned having relapses, and I'm wondering if you know what precipitated it: stress? health decline/immune issues? Any idea at all?
I was told emphatically that ADEM was a one-time event that left a rather lasting impression. Now I'm concerned about relapsing.
Were you relapses the same? As bad? Worse? Did they do more damage? Did you bounce back?
I know, that's a lot of questions, but now I want to be prepared should it happen. My immune system is still fighting to stay afloat - just had a round of pneumonia that ended with shingles. (This sadly has been a common theme...) but it was a long round of bronchitis that triggered my ADEM.
Any of your experiences that you're willing to share would be appreciated.
My daughter just had a relapse after having stoped her prednisolone treatment, her seizures became much worse and we experienced a very high fever. I think it wasnt really a relapse, just that the medicine had helped. Adem is supposed to be a one time experience. If not my neuroligist said we should look into MS.
I am truly sorry to read other peoples stories. It must be so tough what you are gping through, eventually it will be ok again.
I always try to think why my daughter got Adem.she was such a healthy little girl. Many studies says that d vitamin deficit can cause neurological illnesses. My daughter also got the non popular vaccine Pandemrix, but probably one or two years before. It has been and is a bit stressful when you dont know why you got sick. I try to give more d vitamin drops to see.
Good luck all out there.
In my case, its stress or doing too much in one week. I had to learn to say no to more things. I am still very active, work, and most people wouldn't know what I am actually going through. Its much better now, but there were days when I would go straight to bed when I got home. It kind of feels like a flu a bit, but I know the difference because the brain fog will come back and as strange as this sounds.., my brain feels like it swells and gives that floating type of feeling. Sounds like you have caught some of the viruses going around, so I hope you recover from that!
My son gets relapses after major illnesses (bad cold or viruses) vaccines and more commonly after weaning from oral steroids too quickly. Now his neuro doesn’t even give him oral steroids anymore, he gets infusions through a Chem port. He also takes methatrexate, and since starting that, he’s been out of hospital for almost a year. He’s gotten ADEM 8 times, I wish it would give my boy a break.
Eight times! I really hope not. We were lead to believe that it was a one time thing too, but I do believe that stress, exhaustion, dehydration, etc will make the residual symptoms worse. My husband had a bad day today, and now he is jittering and breathing hard. Trying to keep him quiet right now. I do think your immune systems might not be as strong to ward off illness so you have to be careful.
The first attack came in January. Just numb hands. Followed by 5 iv s of solumendrol, an mri and a spinal tab that showed more than 30 white cells… Then followed a peaceful period. A second mri in April was clean and so was a second spinal tab. Then in June I started to feel some movement inside my head… The mri that followed was pretty bad, much worse than the first and so were the symptoms this time. Hands and feet/legs were numb, lots of cognitive problems, with mobility issues, epileptic seizures and…7 iv’s of solumendrol… This second relapse came unexpectedly. The first incident came after a severe cold but the second that caused the damage was unexpected.
My advise: As soon as you feel something weird going on over an extended period of time, have it checked…I said over an extended period of time cause things come and go day by day.
I made a comeback but at a price: Dizziness always present and so is pain.