Acute Disseminated Encephalomyelitis (ADEM) Support Group

Adem specialist neurologist London

Hi all I was diagnosed with possible adem in July but want to get another opinion as I recently got some re-occurring symptoms of dizziness and feeling slightly spaced out…not sure if it’s leftover damage but I never really got over the first episode in July…, have felt slightly spaced out ever since especially during the day/morning before 5 cups of coffe, any decent neurologist one can recommend??

My daughter lives in St Albans. She initially got sent to the Lister Hospital in Stevenage where we met Dr Anupan Bhattacharjee who is based there but also works at the Royal Free where he sent my daughter immediately. She is still seeing him but at the Lister.
Nice man, dry wit !

Hi Gez 09
I was diagnosed with possible Adem around two years ago and this diagnosis was confirmed a year ago. I see Dr Stacpole at Peterborough and she is thorough. In the face of a range of continuing symptoms she has continued to monitor me on a six monthly basis. I am scheduled for another (4th) MRI scan and next March she will decide if I have permanent damage from the Adem, or whether it is now morphing into MS. No medication prescribed apart from betablockers to help cope with the continuous migraine. Beyond that I follow a self help programme put together from suggestions by friends, my neighbour who is an OT, my yoga teacher and homeopath. I’m open to any self help suggestions.
From what I have learned Adem is hard to diagnose and there doesn’t seem to be any medication to help once you miss a very narrow diagnosis window. Stay strong and grab any support offered would be my advice.Please keep posting. I think that, given the rarity of this illness, we probably learn as much from each other as we do from the professionals.

Hi LindaD

I kinda lost hope in the NHS when they thought it was an epileptic episode and tried to medicate it with strong epilepsy medicine… I then called private health insurance and they conducted a load of mri scans and saw some lesions although they had no contrast when they injected me… on top of 100 blood samples they put it down to Adem and then prescribed me 500mg per day of prednisolone which wasn’t fun and plenty of rest… it worked for about two months but now I’m starting to feel a little spaced out and disorientated so going back to see what they say… was kind of hoping to see someone with a lot snore adem experience but there you go… did your symptoms die down and then flare up a few months after??

Gerry

Hi
I initially managed to confuse everyone by not presenting with the standard
symptoms. Thankfully there was no coma, I just trundled along to the GP
complaining of numbness and tingling, particularly in the left leg and
right arm. While waiting for the neurologists appointment I developed
problems with my right eye and the optician re-enforced that I needed to
see a neurologist. By the time I saw her I was also suffering from brain
fog, ME symptoms, balance problems, and had started with the three day
migraines.
The MRI’s showed lots of signs of infection. Apparently ADEM lesions show
as ‘fried eggs’ and this differentiates them from MS lesions. Initially the
specialist was still a little unsure of her diagnosis (because of the lack
of a single, attributable cause) and so I was scheduled for monitoring. The
most recent MRI showed fading in the intensity of the lesions but there is
still some doubt over the presence of a previously unidentified lesion. My
specialist believes that any re-occurrence of ADEM is actually evidence
that it has morphed into MS. There was no NHS literature available on ADEM
and because of its rarity, as you’ll have discovered, there is very little
authoritative research either. However my specialist referred me to the MS
Society website which does have a short piece on ADEM.
Feeling a little lost and unsupported I embarked on a programme of self
help. Now whether anything in my routine has made a difference, or whether
the passage of time by itself would have brought about some healing, I
don’t know. And to be honest I don’t care. What matters to me is that it
has given me back a sense of control. Something that is very important to
me.
I still have all the symptoms that I had at the beginning. However they
rarely present all at the same time, or with the same severity. However it
is all random. I never know what symptoms will present or for what reason
(I am never without symptoms). All I do know is that if I overdo things
(VERY easily done) then I will end up with a migraine (despite the
betablockers - I don’t want to increase the dosage so am partly to blame
for this) and then I’m in bed.
The only proof I have that there is some possible benefit to this approach
is regarding a supplement. A nutritionist advised me to take a double dose,
daialy, of Vitamin B12 to help repair any brain damage and to encourage the
development of new neural pathways in the brain. At this time I started
completing daily an online brain programme called Peak. At the start I was
scoring the same as 17% of players in my age band (63). Now I’m scoring
96%. This could also be because following advice on combating ME has also
given me a little more energy. This has only worked for me because I
suffered damage to the brain. Everyone’s symptoms are different and this
may not be relevant to you.
Well I’ve either bored you or given you food for help. What you have to
remember is that we are a rare group and my Mum always said that I was
special!
Keep well
Linda

Hi Linda good to hear that you are finding alternative methods to control the symptoms. I didn’t have typical symptoms either… I had brain fog first then it moved on to fatigue and then my left side just whent dead. I couldn’t walk straight or for more than 20 yards at a time…the one therapy that worked and still works wonders is a specific type of reflexology…
I’m also taking higher than normal dosage of vitaminD an B from solgar as well as curcumin oil…unfortunately working for myself I always over do it and ofcourse as a consequence I feel the confusion and brain fog get worse which takes forever to get over… we are special I agree… my mum keeps on telling me the same :wink:

Hi Gerry
Very interesting that our independent research has led us to the same supplements.
However you mention that you use a specific form of reflexology. Could you please give me more information? What are you hoping the reflexology will achieve and what specific form are you using?
I have no idea how you are managing to work on top of this. The fatigue and random effects of the symptoms make me very unreliable. Well done you!
Keep well.
Linda

Linda

Don’t worry it’s short lived some of my initial symptoms have come back mainly weakness on my left side etc etc so seeing neurologist again tomorrow. Probably for another mri despite only being diagnosed 4 months ago all I know is that’s I need medication to take the symptoms away…

Look at http://www.artreflex.com/

Gerry Constantatos

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Linda did you get any of you initial symptoms reoccur?? I’ve got weakness on my left side again which is a pain as well as the fatigue🤯

Gerry Constantatos

Yes. Now over two years and my symptoms have never left.For me (and
apparently 30+% of affected adults) there is permanent damage. I have
discovered ways to perhaps lessen their effects, but have no control over
which symptoms will appear and when. The good thing is that they don’t all
appear at the same time. e.g. Wednesday and Thursday last week I was laid
low with migraines. Friday I was well enough to continue with a normal day
(I now never plan more than two meetings/commitments in a day). Saturday
mobility was restricted by a lack of mobility/pain in my left leg. This
continued yesterday when numbness and a lack of grip in my right hand also
became a feature. However I did manage a half hour woodland walk with
sticks. Today the leg is stiff and the hand has tingles, but I also have
blurry eyesight and I’m feeling very tired . See what I mean about it all
being random? What I will say is that rest (despite the frustrations) is
the best cure and you do, eventually, get used to the symptoms. Mine do not
appear to be as severe as at the beginning, but in part I think this is
down to mental attitude. I am fortunate in that I have been able to reduce
my professional commitments and now only act as a charity volunteer once a
week. Less responsibility equals less stress and, for me, less stress means
better control of my symptoms. However I appreciate that not everyone can
be in that position.
I don’t know if any of this is of any use except to possibly re-affirm that
you appear to be experiencing one of the expected ‘norms’ of ADEM. I have
never been offered any meds to help with the symptoms beyond beta blockers
to help with the migraines, so I’m sorry that I can’t make any suggestions
beyond alternative therapies.
Let me know how you get on.
Linda.

OMG I take my hat off to you for coping this well… I’m in the lift and escalator industry and would have probably jumped off the 50th floor of the shard if I had it as bad as you… I must have it very very mild… I started getting slowly bad again after a lingering cold but symptoms just got bad quickly from Thursday onwards and now left side very very weak… I’m sure the neurologist will stuff me full of steroids to regain strength as I can’t even go up the stairs :weary:

Gerry Constantatos

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Yep steroids may help. However my consultant would only prescribe them if
they’d managed an earlier diagnosis and the virus had still been active.
The virus was long gone when she saw me and so she felt that the steroids
would only confuse the issue, although the infection was still very
noticeable on the MRI scans
If you do get prescribed steroids then please let me know how you go on. If
they work for you then I may well request them myself.
Take care.
Linda

I had no active lesions when I had the mri with contrast but they prescribed them when I had my first symptom of week arm and leg in July so no reason why they can’t prescribe you to ease symptoms

Gerry Constantatos

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Sorry for late mail did you have a lumbar puncture ??

Gerry Constantatos

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Hi Gerry
Sorry for delay, I’ve been a bit below par recently. I’ve had no lumbar puncture as there doesn’t seem to have been doubt in the specialists mind as to what the problem was. The initial MRI was very indicative. My problem has always been the prognosis. My specialist has long suspected that this may/has now morphed into MS. Hence my next scan, in December, will also include my spine. I notice that a link has been published on the site to an article on unclear MRI scan results in adults. Maybe that could help. Take care.
Linda

I’m in for an mri this afternoon for spine as well just to see if it’s moved on to ms. The steroids made no difference whatsoever .

Gerry

Hi Gerry
Hope yesterday went well.
When do you get the results?
Linda

Hi yes got s call from neuro it’s morphed into something called balos disease closeley linked to MS

Gerry
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So how do you feel about that?
L x

Not v happy but could be worse

Gerry Constantatos
Project Surveyor

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