Can anyone help me please! I had a second visit with my neuro last week and he told me couldn’t tell me that I had MS or that I didn’t have MS. He said the activity in my brain is dramatic (not unlike my good self!) and could be something called ADEM but this as rare as winning euromillions in a person my age. (41) I still have tingling in my face, suffer from extreme tiredness and my right leg seems to drag when I’m tired. I had a course of intravenus steroids follwing a bad bout of double vision and not being able to stand up straight or hold my balance in the summer. I felt much better after these and the double vision went away.
He is going to give me another MRI, my 3rd, in 3 months time but said he can’t just keep giving me brain scans. I’m not sure where this leaves me and just feel really low at the moment. I have a wonderfully supportive husband but I feel like I’m driving him mad and becoming a bit obsessive about every ache pain and tingle. I’m sorry if I have gate crashed somewhere that I don’t belong but if anyone has heard of ADEM I would be grateful of some help. x
Hi Chris.
ADEM is acute disseminated encephalomyelitis, but I guess you knew that! According to my MRI “bible”, it is frequently seen in children, but can happen to people of any age.
One of the problems with ADEM is that it can look exactly the same as MS on MRI scans - to the extent that some people who actually have MS first get diagnosed with ADEM. One of the main ways to tell if it’s ADEM is to do a follow up MRI scan - if the lesions have significantly reduced in size and number, it’s ADEM and not MS.
ADEM usually responds really well to steroids, but then some MSers also do well with steroids, so it’s not much of a distinguishing factor.
ADEM usually remits in a month or so, but 10-20% of people have residual symptoms. Again, this is similar to MS, so not a good way to tell them apart.
The key thing about ADEM is that it starts after having a virus, a vaccination or infection of some sort. MS might, but it would be a coincidence.
So, if you’ve had a chest infection or chicken pox (or something like that) or if you had a tetanus or typhoid vaccination (or something like that) in the weeks before you started having all these weird symptoms, then chances are very high that it is ADEM.
If your next scan shows that the lesions have gone down a lot, then it’ll be ADEM.
(Most people who get ADEM only have it once btw.)
The fact that your brain scan is dramatic probably supports ADEM more than MS (although this is me speculating here and I could be wrong) because most MSers don’t get loads of lesions from their first attack. (I’m guessing that “dramatic” means a lot of activity.)
Hth!
Karen x
Thank you Karen. I haven’t had any virus (as far as I know) or injections before the attack and the symptoms were gradual over a period of months, started with tingling before my sight and balance went. I have no idea how many lesions or what dramatic means, which I don’t know if I should ask. If I’m honest I’m not even sure what the signicance of the number of lesions is. But the neuro did say there was no change in them between mri’s taken in April and again in August. Is this maybe why hew wants another in Jan?
My lower back has started to really hurt and keeps me awake at night.
Thanks for your post it was very informative.
Chis x
I’m not a neuro, but what you describe doesn’t sound very like ADEM from what I’ve read. I guess the January scan will make things clearer though.
The number of lesions isn’t all that significant - it’s just unusual to get a lot from a single attack of MS - but it does happen. Plus there is only a poor relationship between the number and size of lesions and the severity of someone’s MS. It’s the location of lesions that’s more important - a tiny one in an important place has a much more radical effect than a big one somewhere not very important (or easily worked around - and the brain is pretty amazing at working around problem areas).
Are you getting help with your symptoms? Unfortunately, these days it’s necessary to ask for meds, sometimes very firmly! But there are some really brilliant ones available for all sorts of symptoms. Your back for example - if it’s spasms that are causing it, then a muscle relaxant and physio could do wonders.
Karen x
Thanks Karen, made an appt to see my GP on Friday, thinking maybe at least some painkillers for my back might help.
I feel really thick not understanding the basic terms but thanks for explaining the lesion thing as it was bothering me.
Chis x
Sorry Chis, I just realised that I read your name wrong!
Make sure that your GP understands the kind of pain you’re getting - normal painkillers won’t work if it is neuropathic pain you’re having, and while regular painkillers will help if the pain is muscular, you might be better with a muscle relaxant so if it’s cramp/spasm, they don’t actually happen.
Sometimes it takes a while to get the right med, so if whatever you’re given doesn’t work, make sure and ask for something else!
Karen x
Hi Kim,
thank you so much for your post. I’m sorry that you had the terrible news but relieved for you too! I hope that doesn’t sound unkind its meant in the best possible way.
I think I’ve come out of a dark cloud today as I’ve decided to try and claim back some normality. But its hard because as one thing goes another seems to take its place… My thigh is burning like mad today which is a really odd sensation as the rest of my body is cold.
Best of luck with the meds. I had steroids in the summer and they really helped my vision and balance.
Do you mind if I ask, you don’t have to answer but, does anyone else in the family have ms?
I hope things improve for you when the shock of your dx sinks in.
Chis x
Hi, I found Rizzo`s reply very interesting…she knows some stuff!
Please don`t feel the need to apologise for using these boards.
My own journey thru dx and mis-dx is proof that we are all welcome here!
I hadn`t heard of ADEM…so many symptoms mimic MS, and we can easily be thrown into the wrong box!
Your neuro sounds thorough, so just keep going for MRIs, tests, whatever he offers.
Limbo land can drive you nuts at times, I know that myself. Still got one foot in that box and t`other in PPMS, even after 14 yrs!
luv Pollx
Hi Kim ,
thanks for answering that, I only asked because my grandmother had ms and I think it runs through her family, I think her brother and both of his daughters were dx with ms. It just makes me wonder even though I know it is not supposed to be genetic. Got some new painkillers from the gp today so hoping for a full nights sleep, my back is very painful.
Hope your balance and eyes improve soon, I suffered very badly with both in the summer and high dose of intravenus steroids seemed to do the trick. Best of luck!
Chis x
OMG Debra, that is a terrible blow for a 5 year old. Best of luck to you and your daughter.
Got some new pills from the doc on Friday and have had 2 full nights sleep though yesterday had a really funny turn and fell off the toilet and banged my head on the tiled floor!
Even more embarrassing because we had visitors for the weekend and I just coulddn’t get up. Eventually managed to get husband for help and went back to bed. Very difficult to explain that my legs just wouldn’t work, but weirdly, although they felt heavy, I was able to get around (slowly) later on. feeling very frustrated today and a bit down so need to give myself a slap and get on!
Thanks for your kindness,
Chis x