Notifying DVLA & Returning to Driving & treatment.

[Maverick777]

My wife was diagnosed with encephalitis following at my insistence that she have a MRI scan following a seizure and collapse.

This was just over 3 weeks ago and she has received a 3 week course of anti-viral antibiotics. 16 days intravenously and another 5 days in tablet form. She also received daily injections of blood thinners until release from hospital. Her daily medication also includes anti-seizure & anti-sickness tablets and paracetamol.

She will receive her first out patients appointment via telephone with a Consultant Neurologist on Tuesday. What questions and what can be done to safely get her back to driving independently .

She’s never had a seizure before and does not suffer from epilepsy. What can one expect to happen. Constructive advice would be greatly accepted.

Following her collapse, she was taken to A&E via ambulance . It took 3 days of being release, then returning to A&E before at my insistence she have the MRI and the viral infection was discovered. It took another 3 days before a lumbar puncture and a further 5 days before a face to face with a Consultant Neurologist, who immediately requested a 2nd MRI (I’d been asking 5 days earlier for this) at this point the MRI showed the swelling had increased.

[EncephInternational Partner]

Hi, I am sorry to hear about your wife's recent diagnosis. We may be able to help with some questions, if you haven't already been in touch. Our helpline number is [phone] or email [e-mail]

[kitnkaboodle]

I’m sorry about your wife. This is a scary time for your family. Is the virus known/identified? What are her other symptoms? Encephalitis tends to affect every body part and system—in its severe form.

I will likely never drive again, but I know others who can, but it took them a long time to get to that point, especially if they had seizures in the beginning (not everyone who has seizures from encephalitis goes on to develop epilepsy, but some do). A little patience will go a long way right now. Measure progress in terms of months and years, not days and weeks.

But I don’t know your wife’s case. Maybe it’s “just mild.” The timeline and after-effects are quite different if that’s that case. It will still take a while to ascertain the extent of the inflammation (my brain was inflamed for months) and impacts (mine caused severe damage and permanent conditions and disabilities and even new rare diseases).

Take care,

Kit

[Maverick777 in reply to kitnkaboodle]

Hi Kit,

From what we have be told by the NHS….very little. My understanding, is that the viral infection can only be found using a MRI scan and a lumbar puncture to confirm the virus, we were never informed that it could be identified.

Mere blood tests and urine test will not detect the virus, one assumes those will show an imbalance. Shortly after her seizure, she illucicnated and thought all people looked similar or related.

How did you know that your brain was still inflamed? We have been told that the NHS do not carry out further MRI scans. Which makes me wonder how they know it’s cleared up etc????

All the best and thanks for your reply. Were you ever given a list of what you should and should not do?

Cheers

[kitnkaboodle in reply to Maverick777]

Yes, the particular virus can sometimes be identified using blood and CSF fluid panels. For example, herpes simplex virus type 1 (cold sore) is often cited as the most common viral cause of encephalitis. I am not saying that's what your wife has, just that identification is sometimes possible. For me, it wasn't. We don't know if mine started as an unidentified virus or has been autoimmune the whole time. Acyclovir is the main antiviral treatment option, regardless of virus type, but different viruses can affect the brain in different ways, so it is useful to have as much information as possible.

My follow-up MRI showed (continued) brainstem inflammation a couple months out of hospital. And NHS wouldn't know that without further testing. Ask for what you want and need. Be annoying. Get satisfactory answers.

And no, I never got a list of what to do and not do. I got sick at the height of COVID, and I was an ICU patient who was pushed out the moment I could stand for longer than two seconds. All of my knowledge comes from fours years of advocacy on my own behalf and help from family and a few competent medical professionals. But, early on, I couldn't advocate for myself, let alone think, speak, write, or walk. It was a hellish process. Give it time. And it sounds like I was sicker than your wife, so that's good... in a very macabre way haha.