Does anybody know much about this or had this as i think i may have this rather then ms, I’ve had 2 separate episodes 5 months apart from each other and had a cold before having the second episode i cant remember if i had a cold on the first episode and i havent had any immunization for about 3 years any ideas?
thanks mel
ADEM is supposed to be a one-off, but it’s possible to have it more than once (although very very unlucky!). Saying that, people who get ADEM more than once are often re-diagnosed with MS.
I doubt that a normal cold would set off ADEM, but I could be wrong.
I know it’s easier to say than do, but try not to self diagnose - leave it to the experts, and they will certainly be considering ADEM as well as other MS mimics.
Karen x
Hi mel, I think i may have had ADEM, i had a one off episode in january. I have had mri’s which show lesions on both spine and brain, but i have only had one physical attack. Neuro is setting me up for a LP soon and I think if this is negative then I will asume I have had ADEM, i would much rather think this than MS!
Its also plays on my mind that my one of MS type episode was when I was mid IVF treatment. I had been injecting myself with buserelin. Dr’s say this was totally unrelated but I can’t help but wonder? They say ADEM can occur after an illness or vacine dont they?
I hope you get some answers too, have you had a Lumber puncture???
Hi Mel, I don’t want to alarm you but I was dx with ADEM before I finally was dx with ms. A positive lumber puncture for o bands is very unlikely in a case of ADEM but very likely in an ms persons result. Whichever it is try not to be alarmed as ms for many of us is very manageable. Good luck with your lumber, Chis
With my first episode i seen nero he thought it was one off and hadnt even seen my mri yet, I was spectical whether he was right or wrong as he hadnt looked at my scan when radiogist from my hospital seemed to think it was ms as did my gp or a stroke.
Tried to get on with my life not so long after i started to get confused and started making mistakes in work felt run down had cold then had tingleing in my right index finger which spread acoss my other finger then up my arm then in my right leg had this for 4 weeks it was just tingerling abit went to doc they wrote to nero again, my head aches started again really bad then numbness started to go from right arm so felt relived thought it was going next day felt ok getting up went to work then within a hr really bad pins and needles and unbearable pain bad stiffness teh it spread into my shoulder and into my toes was finding it difficult to walk went to docs they upped amitripaline within 2 days pins and needles gone but still stiff and numbwas ok for a week then i had pain in left leg my hip knee and ankle for a few hours then pins and needles started in right leg couldnt bend it toes were sticking up and wouldnt relax and wouldnt touch floor, pain had gone from left leg then was in pain for few days again settled down for about 10 days then pain in right leg and right arm was painfull still, started having pain in my left eye down the side of my nose and cheek and when i wasnt having that i woyld have a pain in fore head and nose really painfull have spent 2 weeks in bed with this pain and severe fatigue have also had heat acoss my left arm and leg with pins and needles and numbness but not as bad as my right and left still has a slight loss of sensation but my right feels deep numb and ive also had a numb face and itchy ear and back of throat twice never had that b4.
The back of my head is killing me and i have no energy its been like this since end of june there is prob more but cant think of at mo im just getting more and more upset i keep looking up things im worried ive had a stroke then im worried ive got a brain bleed, id rather it be adem so i can get on with my life im a mess at mo and my nero wasnt very good last time and im sure he wont be any better when i have my appointment on mon.
He did refer me for a lumbar puncture last time but he didnt think it was nesscassy as its very ivassive and some body told me the waiting list is about 1 year in my area and that hospital is 50 miles away.
I keep thinking i should of gone to hospital ages ago but i was unaware you could get steroids to stop the numbness before and i live in sticks our hospital isnt very good the nero doesnt even come to our hospital i have to travel to a further hosital to see him im just going out of my mind at mo and my gp who i found very supportive and somebody i could talk to has left and others are not as careing as him
Please dont be alarmed by a lumber puncture. I know that you hear lots of horror stories but I had mine done by a lovely young doctor and it was uncomfortable but not unbearable. Make sure that you keep your neuro appointment as you need to know one way or the other, Chis