Help with unspecified diagnosis

Hi, I’m new here and I’m hoping someone can give me some advice or see if my story resonates with any of yours. This is a bit long winded but I’ll try and keep it as short as possible. In 2013 I was suddenly very ill, one second I was fine and the next I had awful vertigo, sickness and slurred speech. I went to bed and after calling 111 the next morning I went straight to the doctors who sent me to A&E, the doctor suspected I’d had a stroke. At the hospital thankfully that was ruled out and the doctor said he thought it was labrynthitis and sent me home with some medication. I was really poorly over the next couple of weeks, I couldn’t think straight, developed a stutter, vertigo and generally felt awful. I went back to the doctors who referred me to a neurologist. I had to wait about six weeks to see the neurologist who said that he thought I had ADEM. He sent me for an MRI (another six week wait). My scan was normal and I got a letter to say it all was fine it wasn’t ADEM. I never had any explanation to tell me what might have happened. A year or so later I was sent back to another neurologist as I developed trigeminal neuralgia which lasted around a year. I also have problem with my voice (suddenly hoarse sometimes for days or weeks), brain fog, extreme tiredness, days where I feel ill but fine the next day, but I have been determined not to let this affect my life and live a very healthy lifestyle to keep myself well. Four months ago I decided to make an appointment with a private menopause doctor as I am 47 and thought HRT would help (it has a bit). She asked me to get a copy of my medical records and at the top of my notes it says 2013 Acute disseminated demyelination, unspecified. I was a bit shocked to see this as I had been led to believe I didn’t have ADEM and have never been told what happened and at no time since have doctors married my ongoing symptoms with that event. They may not be related but I think they are. Also, I’ve now been called to have a COVID vaccination (which I’m very grateful for) because I’m in the latest vulnerable category, again I was surprised to get this. I wondered if anyone knows what unspecified means. I’m also thinking of contacting the hospital and asking for my reports from that time to see if I can get some more info. I feel a bit like a detective with no clues at the moment!

My name is Lynn and I’m sorry you have to deal with this. I too was diagnosed in 2013. I was diagnosed after one month of having ADEM. Long story short…I was diagnosed, but when I went to the hospital, a well-known medical school, the doctors there, had NO idea what ADEM was and they insisted I had MS. I had to fight for my own diagnosis. Unfornuately, after getting past my ADEM attack and healing the best I could, I have had NO further issues. So much for having MS. A lot of your symptoms are mentioned by our members. As far as the Covid vaccination, I have been told by the doctors I’ve seen, to avoid vaccines as ADEM is an auto-immune disease and no one knows how a vaccine will affect our conditions. If you’d like to keep talking, let me know or feel free to ask more questions on the site.

Take care, Lynn

1 Like

Thanks for sharing your story Lynn it’s much appreciated. I suppose I just want to know either way but I might have to accept that I’ll never know. Not sure what to do about the vaccine I read this COVID-19 vaccination statement | The Encephalitis Society which made me feel better but I think I might get in touch with these guys today.

On another note I have filled in a form, which I’ll post today, to get my hospital records. Also found a podcast about the COVID vaccine and encephalitis Covid-19 vaccinations and encephalitis - podcast | The Encephalitis Society.

Hi Kate, and welcome!! Many of us have similar stories; your symptoms and events mirror those of lots of our members. I was very lucky in that my ADEM was diagnosed quickly in 2018 through the MS/Neurology program at Weill Cornell in NYC. That said, I don’t know that it really made such a big difference in the outcomes. My symptoms were much the same as yours.

What I would like to share with you is about the COVID vaccination. I now live in the San Francisco Bay Area and am treated at the Neurology/MS Clinic at UCSF. They sponsor occasional Zoom meetings, which I’ve found useful. We were NOT discouraged from getting the COVID vaccine. We were told to advise our Neurologist, but to go ahead and get them. I’ve gotten the first shot, and will have the second in two days. If you’re not comfortable making your own decision, consult with your neurologist or doctor. Your personal situation might call for different protocols from others of us. Good luck! Keep us posted.


Hi Rita,

Thank you so much for your response it’s so nice to speak to people who understand what I’m talking about :blush: and thank you so much for the vaccine advice it’s really good to know that it’s safe (as any vaccine can be) for people who have had illnesses like this. From what I’ve read it seems encephalitis sufferers are being encouraged to get the vaccine because it doesn’t contain any live virus and that the COVID illness has caused a small number of people to develop ADEM. It’s good that they are learning so much about COVID now.