I've now had a letter from a neurologist who I've never met about the first MRI I had since leaving hospital about 7 weeks ago. She says that the inflammation in the affected area of my brain due to encephalitas show a lesser degree of swelling. There's no mention of any follow up appointment to discuss what this means and no mention about what happens next.
I'm still not feeling very well and still have many symptoms. Was the inflammation expected to reduce by this amount or should it have been more? I don't know if this letter is good news or not.
I'm completely confused about what's going on and don't know if I'm doing well or not. I certainly don't feel to be.
Does anyone know what the typical wait time is to see a neurologist after being discharged is? It's all a complete mystery.
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Remos
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Hi Remos, unfortunately your situation is pretty typical, left in the dark with no information or support. Not even a three-fold leaflet.
Don't know where you are based but the Encephalitis Society in the UK is a big help and can provide loads of info, leaflets, phone support, website guidance and general morale boosts.
With memory loss I find it impossible to keep track of appointments etc. - keep a diary and stay positive - family or friend help is a must, it takes a lot of energy, time and dedication just to keep on top of things.
Thanks for your reply. I suspected this to be the case. Just wanted to check on other peoples experience. I'm also making use of the Encephalitis Society support which I always find helpful.
When I was in the hospital, they ran all sorts of tests besides the MRIs. This involved many different doctors and persons who specialized in different tests that were performed. Getting all of this information analyzed takes some time, since there are many different sources. They also want to be sure that you are not provided with false information that could be misleading or frightening.
In my case, the lack of any information for a time, provided me with some fright as well! My primary care physician gave me sound advice: "Relax and don't try to figure everything out. You will only drive yourself crazy!😊" He said this in the most lighthearted of manners, but he was correct.
I found that I had to be very patient. With myself, and with others. Hoping you get to finally have an appointment with the proper doctor as soon as possible.
It takes time to heal. Some of us get better rather quickly, some of us take a lot longer.
Now I must go since one of my cats is getting rather cross with me for not filling her food dish!
Hi Remos, Well because I was only 1, it was paediatricians for me but when I was ten I had to be hospitalised while they changed my epilepsy medications to new one's and I believe that during this time a neurologist came over from The Walton Centre (so my Dad said) and that was only because he asked if I could see one, this was 9 years after contracting Herpes Simplex Encephalitis. I have never had an MRI to be honest but I have had all the other scans when I had 'E' and again when I was transported to and from Alder Hey for a couple of hours during my hospitalisation while they were changing my meds.
I believe they never even mentioned any swelling to my parents so my Dad said.
Sorry if some of this is back to front.
Back to your question, yes it is good news that the amount of inflammation has reduced because I have learnt that it is an improvement, and that it can take time to make more improvements etc. Be patient either yourself and phone
the Encephalitis Society for more help and/or information on +44(0)1653 699599 they are lovely to talk to.
They weren't there for me back in the 1970's but I'm so glad that they are here for you now.
I had 1 appointment with the neurologist and then referred to neuro psychologist which I still see 2 years later, in my honest opinion and I feel sad to say, your literally just dumped back into society and left to get on with it. I don't feel they truly understand the after effects it causes and I find it hard accepting the limitations it causes me, I have bad fatigue so struggle at work, my concentration and focus is bad, headaches and memory loss, my problem is pushing myself too hard and I end up ill and feel I've gone backwards, best advice I can give is too listen to your body and take it slowly. This group chat is the only thing out here that connects us and we can share our thoughts so you don't feel so alone xx
What a lovely response. I really appreciate you taking the time to explain your experience and views. They seem very similar to mine so at least I know I’m not alone in this struggle. Thank you.
It seems very random I was discharged and had to request consultations and an MRI. It seems as long as you are not getting worse or recover after each episode they are happy to leave you Sorry I can't be of more help
It sounds as though the results are going in the right direction, which has to be good news!
It's so frustrating when just results are shared but not 'what it means to you'.
Could you contact the neurologist and ask for an appointment or telephone call to see exactly what the results mean? Or contact your GP who I am sure would advise you of what you can do next.
Unfortunately you are left chasing information and at times feeling like you are making a nuisance of yourself 😉 but if this was a loved one you would be chasing until you get the answers.
If you are not feeling up to it, could someone ask for you?
I’ve actually made a start in a similar way you suggest. I contacted my doctor who said I should push for an appointment. I also called the number on the neurologist’s letter to see if I could speak with her. I wasn’t able to but I was told I was on the waiting list to see her and would be contacted again with a date, although I was told it would probably be months.
I’ve also decided to write my own letter to the neurologist outlining my ongoing condition and setting out a number of questions I’d like covering at the appointment or by letter beforehand.
It really is a desperate situation that we are all left to try and sort this out ourselves. I also think that there is a lack of care, compassion and basic understanding of this condition from the consultants. All very shameful.
Hi Remos,The problem with neurological conditions is they don't know who/what you were like before.
Your feeling of unease about who and what you are now is something so vague in their eyes that it can't be seen as a problem - compared to falling downstairs or pouring out a bowl of soap powder thinking its breakfast cereal and ending up in A and E.
It's very distressing to be in this state of depersonalisedness, losing memory of family and friends and significant life events. But apart from endless talking it's hard for them to see what else they can do.
They can't rewind and they can't heal, all they can realistically do is offer talking therapy for ever and try medication for anxiety and seizures etc.
In my experience you have to seek out pleasant and positive effects like municipal gardens, the sound of waves, flowers, nice days and stroking baby donkeys. The healing comes that way, or try a careful chaperoned trip to the shops or into town.
Nevertheless if a dog leaps at me or a car drive too close or too fast the panic buttons can start to seem handy.
It's a tough call, a rough ride and slow progress. Carrying a walking stick helps to alert people to the possibility that you may be a bit on the fragile side.
Don't push yourself too hard but keep at it and don't be put off. You'll get there and an almost full recovery seems possible in my experience.
I am so glad you are making positive strides in finding out the info.
It's a really good idea to copy your GP in on your letter to the neurologist. I also think it's an excellent idea to write to your neurologist of the concerns you would like to cover (make sure you keep a copy and maybe log the improvement s you see between writing it and the appt day!).
I have to say the best advice of the day is to find some baby donkeys to stroke! I think that's good advice for us all and just the thought made me chuckle!
Encephalitis can lead to a brain injury. Not only can it be invisible on the outside but it can also be invisible on the inside too. I had encephalitis too and any swelling or damage is not visible in my MRI’s however that does not mean I don’t have a brain injury or that I don’t have side effects from my encephalitis. You’re symptoms are real and I would recommend reaching out to your doctor or GP and try explain what your daily, weekly life is like for you. It might be helpful to share this information from The Encephalitis Society that helps the medical community understand encephalitis better: encephalitis.info/Listing/C...
Here’s a video of Paul’s experience with encephalitis and life after encephalitis: youtu.be/Rgco3aiIVMs
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