Is this ADEM OR MS? My first MS attack. Hi I’ve been thinking about my illness and it concerns me. In October 2012 I had severe labyrthitus, took me five days to resolve. Never had it before in my life. I’ve read that herpes ear virus can lay dormant. Then 10 weeks later I get my symptoms of dizziness vertigo (when moving head) pulsating left ear, fullness in in ear, pressure in ear, warmth in left ear and something moved in leaft ear. This progresses to double vision at this point the GP refers me to the neurologist as non-urgent 6 weeks. I’ve seen GP three times for the dizziness and double vision for Epley treatment but its unsuccessful. I secure an appointemtn for 13 days alter on the choose and book NHS site. Its a VI nerve palsy that goes to both eyes and during this time I began to feel not myself 100% and am stressed and anxious and have horrible anxiety attacks at night, about my home life not my illness. l am unable to help myself and don’t think of A&E or returning to the GP for the 4th time or reseaching my symptoms on web. I hold out for the neurology appointment. The neurologist when I finally get to see him 13 days later. He says the GP should have referred me sooner. Neurologist prescribes me steroids ( he knows about my previous labyrthitus) by this time i’ve forgotten to tell him about the pulsating and ear symptoms. In between the first neurologist appointment and MRI I deteriorate (split second loss of consciousness, sleep apnea, wake up in night feeling nauseous), in the morning I visiti neurology outpatientts and am unable to be seen by anyone, but a record of my visit it made by the secretary. I go home and not A&E as it is not suggested and I don’t think of it.
I get my results by phone not face to face, told its not menegitis as that looks different, i’m told I have a swelling on the brain but he doesn’t ask me about my visit to neurology outpatientts and I don’t get to tell him… I get my prescription from the GP she tells me its demyelination on the brain. I take the oral steroids and guess what when I take the steroids at home my symptoms go to my spine and I get bombarded by more symptoms three days after my first scan - including weakness in both arms, unable to sit in chairs as causes a sore shoulder, feet swelling, left foot goes purple and has two numb toes, twitching feet left foot jerking, numbness between legs followed by bladder issues for two days, a TIA ministroke moment, severe constipation these symptoms go on until May. At the time I think its steroid reactions or all part of the demyelination in brain. My VI nerve palsy right eye carrries on until March left eye unti April.
I go for my follow up in March I still ddin’t feel 100% and fail most of the examinations with clonus on left ankle. I didn’t get to dicuss my symptoms as I think its all arat of the steroids or brain lesions. He is concerned about my examination results and diagnosis me with possible RRMS. As far as I know I did not have optic neuritus (no loss of vision just double vision). I saw a different neurologist last week he is sending me for a third scan as the new lesions on my second scan may be from my first attack as the many spine symptoms presented themselves three days after my first scan. It will be the third scan if there are new lesions will be definate MS if my nervous system is still active. AM hopefully seeing an MS neuro soon. I’m still recovering from the ADEM or severe MS attack and its been about a year now, but have had no new relapses as such. Have discovered yesterday that correct treatment for virus and brain swelling is antivirus treatment with steroids otherwise only steroids may make the immune system too low and help feed the virus. Strange when I take just steroids my symptoms progress to spine. I have lesions that are indicative of both MS or ADEM and many spine lesions. A huge assult on brain and spine in one go is indicative of ADEM. Let me know what you think MS or ADEM?
This is interesting - as there is a lot of research being done on MS being a viral infection. Seeing as many of us seem to start with Shingles [herpes virus] or Glandular Fever - l do feel there might be something in this.
l have now had Shingles 3 times. These viral attacks are usually when we are feeling ‘low’ or down - more susceptible of
Another things was I still had the pulsating left ear now and then up until December this year and it faded away. As it was fading away it turned to a vibration and I went to see the GP she said the vibration might be fluid in th ear. Within a week I had my first facial spasm. So is there a link may be? I understand facial spasms can be caused my many things such as ear infection, MS to name a few.
If you want to make print bigger click on the page you want to make bigg then press Ctrl and while you are pressing it use your wheel on the mouse by pusjing the wheel forwards to make bigger or smaller. If you know what I mean.
Not sure what I think about ADEM. Be reading the replies with interest.
This sounds so similar to my story, in 2010 I was diagnosed with ADEM, and was in Bristol children’s fir 8 months, followed by another 4 in frenchay for rehabilitation. I had identical symptoms to you, however I also have loss of bladder control, and optic neuritis. Between 2010-2012 I’d had two other relapses but where put down to going back to normal life too quick from recovering from ADEM. However two weeks ago, I started having the same symptoms again, yet another relapse, the gp also said I had labrynthitis, however nothing he have me was working and sent me to a paediatrician who dismissed me, so being so desperate we traveled three hours to Birmingham children’s hospital a and e , and two days later, diagnosed with ms. PLEASE IF YOU DON’T GET SEEN, GO TO A AND E, YOU’LL GET AN ANSWER QUICKER, I genuinely do reccomend it.
Forgot to say I also, love you have double vision. And the steroids have never worked on me either. You’re story, is very similar to mine, I’ll be intrigued to follow your story!
Hi Franzbeth your storey is interesting as you were relapse onset by the sound of it. You may well have had ADEM to begin with but your nervous system has carried on being active to date. But that doesn’t mean it won’t calm down in future. Same with anyone with MS. It could be a period of activity for now. Take care
The thing is with ADEM and MS they both look the same on MRI. its only the patient symptoms that might tell the difference. I have multiple lesions in brain and spine in one go and had a horrendous polysymptomatic experience of brain and spine. lost conciousness and had an altered menttal state which is suggestive of ADEM. But take my scan to a new neurologist and if they know nothing of my expience/ symptoms it could be ADEM or MS.
Went to see my GP yesterday and told him of my experience, he said sounds like an ear infection. He also said that the antivirus they give with that often doesn’t work (as it only covers two types of viruses). And as my symptoms went to my spine when I took the steroids and was bombarded with them. Its like I had the full MS experience in one relapse. It was odd as I was given a booklit on MS and it discussed symptoms I may get. And it’s yes i’ve had them all in the first relapse and at the beginning of the relapse.
I’m raging now. I wrote to the GMC and made a complaint why the GP failed to refer me as urgent. They are saying they are not prepared to investigate further unless I provde more evidence. MS is not urgent but ADEM is to get to neurology I was ill during my servere MS or ADEM attack and the GP referred me as non-urgent, I deteriorated badly. . They both look the same on MRI. The only evidence I have is the apparent ‘record of my visiit’ that was made to neurology outpatients the day after I deteriorated - have now asked for a copy of my hospital records to see if its in there. Secondly when I had my followup appt with the neurologist he examined me and I had loss of strength on both arms and faiiled most of the examinations, 3.5 weeks after my first MRI. He asked me if I had blurred vision, i said yes then thought no double vision, not blurred which at the time I still had the double vision in left eye. But I didn’t correct him. So the neurologist must have thought even with loss of strength in both arms (unusual for MS) if I had blurred vision at some point (optic neuritis) then it must be MS. So he diagnosed me with possible RRMS. But you can get optic neuritus with ADEM or MS - so that shouldn’t matter.
So now its my word against theirs if this was ADEM or MS. I felt their was urgency and their was loss of conciousness in my health so swings to ADEM. if no urgency then it could be MS. I’ve only had the one relapse which has taken me a year to get over. Am seeing a MS neurologist soon hopefully. The only good thing to hope for is that is if was ADEM there might be chance of no new activity.