I am currently 15 and half years old and living in India and I am suffering from an unrecognised autoimmune disease (Doctors say MS). I first had an attack in 2010 June when I had headache, vomiting, stomachache, fever and eventually I lost sensation and movement below chest after I was treated with IVIG and steroids. I was diagnosed with ADEM Then in 2011 November I began losing my vision in left eye with symptoms including fever, head ache, tingling sensation and diagnosed with Optic neutris. I had 80% recovery by steroids. After that I had another attack of Aphasia in 2012 March after I had chicken pox. The attack was similar to old one. Well, I had full recovery in that case. It’s been 5 years now from that attack and everything is normal till now. I am really stressed that if I will get another attack. My doctors say it’s MS but I don’t believe cause my CSF Oligoclonal bands test was negative. And I have read that 95% people with MS have positive results and Aphasia is uncommon in MS because of involment of grey matter, also I didn’t have old lessions in MRI. The doctors I consulted online say it looks more like ADEM relapsing. Please help me by diagnosing with right disease. Is it really MS ? Or ADEM maybe ? Can I get another relapse ? Thank you!
Hi, firstly let me say how eloquently you put this post together!
I doubt many other 15 years olds could do as well!
But, I’ll have to Google ADEM, as I don’t know what it stands for.
Your medical history is complex and far from easy for anyone here to to fathom a diagnosis.The only people who can diagnose are consultants in whatever field they, and you, are involved.
The best advise I can offer, is to return to the same specialist who is working with you, or to seek out others you may trust more.
Hello again. I have briefly looked at what ADEM is. Demyelination is involved, which is the reason why messages through the body, from the brain, fail to reach their intended destination.
So, yes it could be MS.
I too have had a quick look. It seems that ADEM affects more children than adults. Which is presumably why they diagnosed ADEM at first. But ADEM typically occurs just once whilst MS is a relapsing remitting disease. If ADEM can come in a relapsing form, then you could be right and it is ADEM.
The problem is that we can’t tell you that X means it MS and Y means it’s ADEM. You really need to be asking your doctors. these questions.
To be honest, it sounds like it would be a good thing for you if it is indeed ADEM.
So let’s hope they do come down on that side of the fence.