Me again.The brother was finally admitted to the university clinic. As I already said, I suspect that after the primary HSV1, he now has some autoimmune encephalitis as a secondary one.
What diagnostic measures should I insist on, what should they do in terms of procedures, analysis?
Lumbar puncture with full infectious and autoimmune panels, MRI with and without contrast, continuous EEG, etc. at the very least. I am probably forgetting something.
Somehow we managed to convince them to do all this, we are waiting for the results.
Although they still deny the autoimmune disease, but say that these are the psychological consequences of encephalitis, that it is for psychiatry.
What should I do next? I don't want him to go to psychiatry, I think his condition will worsen there
Four years later, they are telling me the same thing. Functional neurologic disorder and non-epileptic seizures and depression and anxiety and post-traumatic stress and agoraphobia. The thing is—all of these are SECONDARY to the original neuro-inflammatory disease.
Are they saying all of his symptoms of autoimmune encephalitis are actually “only” psychiatric? Has an antibody been found? Does he respond to immunotherapies?
That's what they said before they admitted him to the clinic, that it wasn't for them...but they still admitted him and the diagnosis is ongoing, we'll see when the test results arrive
Keep pushing. I know it's hard.
Puncture analyzes for bacteria and viruses have arrived, and they are negative... Immunology will be finished in two weeks... There are lesions on both hemispheres... Neurologists suggest hospitalization in psychiatry, they assure us that with adequate therapy, he will be more functional.. . because now, although he is mobile, he can't even go to the toilet by himself, and when he does, he refuses to pee, etc.. He doesn't recognize his apartment, doesn't recognize his parents, me... He refuses food, his jaws are almost closed, he barely we put the food in the mouth... and then after a while the mouth opens on its own and starts communicating... sometimes it just hears or makes strange noises with jerks of the arms or legs... I'm really very worried and I don't know what to do next
Antibody panels on CSF ordered? Continuous EEG? EMG on the limbs with continuous motor unit activity? Bladder testing, specifically urodynamic testing?
Did he have severe shaking/dystonia that nearly dislocated his jaw? That’s what happened to me.
I know all of this seems so alien, but I promise you I experienced all of that plus more. Give him time. And make the damn doctors do their jobs.
Blood tests, Urine tests, spinal sample. scans. They will probably do all this. It's hard to diagnose AI as there is no infection, just damage. I'm just repeating what others have said. AI just leaves you vulnerable to any infection turning to sepsis.
Buy a digital in ear thermometer and keep a record of his temperature, also monitor his urine for cloudiness every day. I keep an eye on my blood pressure with an arm device and also my pulse rate and oxygen level. It helps you feel in control.
A social worker should be available via your GP. Psychiatry gets you the right medication. Psychology helps with morale etc. I got physio and speech therapy too.
I'm in my 5th year and was unable recognise my home, clothes etc.. Now I'm much improved, it just took time and rest. See my other posts they may be useful.
Best Wishes, G2
Thanks and a Question!!
Hi my journey is a little different.......
Thoughts and ideas since starting this trial 
New Here, 1 year after being diagnosed with viral encephalitis
How to accept or come to terms? 
