I'm not sure either :-) It sounds like the symptoms of ADEM an MS are a little different;. Fever, headache (can be prolonged and severe in children) nausea and vomiting are primary symptoms of ADEM and are unusual in MS. I never had them.
I would think that ADEM without these symptoms might be Clinically Isolated Syndrome (CIS). First MS relapses are often treated as CIS before a second incident.
Kyle
@Kyle, thank you for your input. According to the link you provided and thousands of clinical studies I read, I am still confused. I know that ADEM may develop MS, but according to clinical trails, the follow up for such a developing lasts maximum 5 years, as the scientist assume that this could be the limit by which patients with ADEM develop MS. I was 14 years old and the sympthoms background ADEM is diagnosed, although there was no MRI of that episode, I still believe that the diagnosis of encephalomyelitis was correct, despite the fact that MS was in question.
I had full bladder during that episode, for one month and a half and finally, when I have been able to urinate myself, the bladder issue I have been experiencing since then, started.
I had NO relapse, nor major or minor. There was NO neurologycal sympthom for 22 years. I have studied, I have finished high school and university, I was a teacher, I got married, I gave birth to the most wonderful child on earth, I passed over very tough emotional periods .... I had a perfect normal life.
Anyway ... maybe God loves me and despite of the diagnosis, He decided an atypical progression of the disease. I suppose I will have some answers in another life if not during the nexts MRIs, when performed.
I have decided to go on DMD (Aubagio) because some big part of me did accept the MS dx and I don't want to assume any guilt for not doing all in my power to change something for my future...
I am so happy and grateful to have found this community and you all!
Hugs :-)
Jude
Hi there! Welcome to the club noone wants to join.
I think its MS. Did they do any other tests? The location of your lesions sound very MS-like to me. Periventricular lesions are the prime location for MS lesions and more rare for ADEM. Think over your last 22 years, has there ever been any weird things that you shrugged off? I have heard of a lot of people who have one MS attack and then nothing for 10-20 years (I envy those people :)).
I think your spinal lesion maybe the cause of your paraesthesis. C3 and C4 are cervical, so i think it might be those lesions rather than your brain ones. I don't think they are necessarily the cause of your bladder issues.
BUT i'm not expert so I'm not 100% sure of any of this. I don't even think the experts are 100% sure...
My brain is full of lesions and I have around 5 lesions in my spinal cord. Around C2-T10 I think. I have had lots of paraesthesia. I was Dx from being numb from the waist down. They found a nice big lesion around T10ish. Loads in my brain and a few around the cervical cord. Since then I've had paraesthesia in my feet again, spasticity in my left leg - followed by weakness, ON in my left eye. I'm going to have another MRI on tuesday and I'll pick up my last two MRI scans. I'm going to play the trace that lesion, match that symptom game!!
Sorry we had to meet over MS... but you came to the right place! How are you doing on your drug? I'm on Rebif :)
Hi -
There are some similarities between MS and ADEM. It is possible that what was initially diagnosed as ADEM was the beginning of MS. My MS was diagnosed 20 years after my first attack. I had no major relapses for 18 years,
The one thing I did have, when we started looking, were both old and new lesions.
The National MS Society has some information on the relationship between MS and ADEM. You can find it here:
http://www.nationalmssociety.org/about-multiple-sclerosis/related-conditions/acute-disseminated-encephalomyelitis-adem/index.aspx
Kyle
Well ...
@DiamonDixie, I am on Aubagio.
@supermum_ms, helpful and thankful answer, as usual :-)
I still don't get it and God knows how hard I struggle in my situation... I found in what you before mentioned that lesions on spine determine sx's such bladder issues ...
I revelead my story some weeks ago, but I keep on wondering if MS is the correct name of my diagnosis. Because, 22 years ago I had a viral encepholomyelitis. The symthoms of that episode were: fever, loss of consiousness to some sort of coma, delirum, full bladder, constipation, tremor. That has lasted for 1 month and a half. Everyone saw my recovery as a miracle,taking into account that all my familly and my friends were advised to come to visit me as I shouldn't have had much time to live ... Anyway, since my recovery I experienced this bladder issue, namely an urge for urination very often, but I have learned to live with this issue and transforming it as my normality. There is no MRI of that time, but now I am aware that this bladder issue is a consequence of my lesions on my spinal cord.
Since that, I have had a perfect normal life, no neurological symthoms. In Febr this year, I had that small paraesthesis on half of my lip, chin and tongue. That was the moment when I performed this MRI and the lesions were seen. No active lesions, all of them being old. The paraesthesis did not remit after 3 weeks of Solu-Medrol, but it was remitted after 2 weeks after ending the corticoids therapy and I administered mysefl a supplement of Manesium and B6 Vitamin. Sharing with neuros the experience I had 22 years ago and seeing my MRI, they all concluded in a instance that I have MS.
My questions are: Did my MS started 22 years ago and the ADEM-like episode was in fact MS? I do not know ... they say the lesions of ADEM is much larger than MS but taking into account that there are 22 years in between and that they could have become smaller adn there is no MRI of that time ... they say probably.
What if I do not have MS and the lesions seen on MRI are those of the episode of 22 years ago? As there is no active lesions, I do have this sequaele of bladder since then and this paraesthesis episode has nothing to do with a neurological disease ... they said they cannot be certain as there is no MRI of that time.
What if I do not have MS and I started DMDs and that could cause more problems?
Concerning the lesions and the predictions, there are some theories the specialist are talking about, check this out:
https://www.msatrium.com/#/science-of-ms/hot-topics-in-mri
''See'' you soon ...
Hugs,
Jude
Hey invade away babe :o)
Ok the rule of thumb is that you can't make an exact map of lesion location and connect it accurately to every sx a person has. Lesion location gives some clues to the type of sx's a person might have but you'll drive your self loopy trying to predict the future, because no one can accurately do that for you.
Some lesion locations are more predictable to the sx type than others, eg spinal cord - bladder, bowel, sexual etc, cerebellum - ataxia (both limb and gait), nystagmus, disequilibrium, and hypotonia. but what I think your trying to do is work out, is if your going to end up with a certain sx because of where the MRI showed a lesion. If that is what your trying to do, I wouldn't think you can work that out because for various reasons, keep in mind that not every MRI lesions causes a sx, not every lesion is picked up on an MRI, lesions heal, silent etc etc
MS is a mysterious disease, no one can predict your future!
Cheers............JJ