In 2014 I was diagnosed with ADEM which was treated with iv steroids. The symptoms mostly subsided apart from pins and needles in my right hand and right thigh. In the past 2 months symptoms have returned, pins and needles, numbness, headaches, eye pain, spasms to hands etc etc I saw neuro consultant on Friday and she is arranging a further MRI scan and commencing me on Gabapentin. I saw the MS nurse and am being referred to a fatigue clinic. My original MRI scan in 2014 showed brain lesions and there were positive bands on LP. My confusion is down to the fact that I still have no diagnosis and what more will it take for that to happen ? Can anyone enlighten me ?
Hi Mariem
I just had a quick look at ADEM and it seems that it’s quite difficult to differentiate between MS and ADEM. The differences usually are that ADEM is accompanied by a fever and/or an infection or immunisation and often includes loss of consciousness plus only has one occurrence of symptoms that then improves, whilst MS has no fever or loss of conciousness and most often is relapsing remitting.
Now that you’ve had a second attack of the symptoms, it may be that you do end up with a diagnosis of MS. But obviously, that’s not something you can rely on without talking to the neurologist following the MRI. In the meantime, all you can do is ensure the MRI happens as soon as possible (ie phone the appointments team at your hospital and check where you are on the list and whether you can move up it), use the expertise of your MS nurse and the fatigue clinic and maybe try to get some physio to make sure you stay as strong as possible.
Sue
The MS society has what looks like a good factsheet here https://www.mssociety.org.uk/ms-resources/adem-acute-demyelinating-encephalomyelitis-factsheet. ADEM appears to be not that common - and even less common in adults. It is even less common - but not unknown - for someone to have 2 episodes of it. I think that your MRI scan and the results of your latest blood tests will give a lot of the answers. Hopefully all of them.
The subject of abnormal reactions to infections, what triggers them and their links to the autoimmune system in general is a real hot topic in medical research at the moment. It’s a bit of a chicken and egg puzzle at the moment. Does a faulty immune system cause the body to overreact or vice versa? If it is the first, what has f***ed up the immune system in the first place?
I am fascinated by this, not just because of my MS and other immune system conditions but because I have a close relative who has developed a completely compromised immune system where even a simple sore throat can land her in hospital with sepsis. So far she has been very lucky but we are all aware that her luck could run out and a simple infection could prove fatal. So far, the doctors have been stumped as to how to stop this in its tracks - although they are FASCINATED by her case
[quote=Boblatina]
Don’t think the link in my first post was working - try this one
https://www.mssociety.org.uk/ms-resources/adem-acute-demyelinating-encephalomyelitis-factsheet
If that doesn’t work, try looking for ADEM in the list of publications on this site.
Thanks for the replies. Have to wait and see what next MRI shows up. Not worried, just fed up with myself at present and would at least like to know what is causing all my problems.
Read the link on ADEM that you suggested Boblatina. Hmmm . . . due to the fact that my symptoms almost cleared up but are now back, I’m not convinced that it’s ADEM. Watch this space !
It will be interesting to find out. Good luck whatever the final verdict is!
I’ll bet your relative is delighted that her medical team are stumped but fascinated!!
[quote=“Ssssue”]
I’ll bet your relative is delighted that her medical team are stumped but fascinated!!
[/quote] Yes. It really cheered her up when she was hospitalised on her 21st birthday 
How bloody awful for her. What a nightmare the immune system is, in fact, what a totally mystifying ‘designed by committee’ thing the human body is.
Sue