Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
If there are any medically informed people out there, I'd like their opinion on the following.
Fifty percent of viral encephalitis cases go undiagnosed or are diagnosed as "nonspecific."
Do you think of this relatively large pool of patients, some could in fact be autoimmune or have become autoimmune forms fo encephalitis following an infection or perceived infection (e.g. a vaccine)?
How do you know that 50% of the viral encephalitis cases go undiagnosed? I'm not trying to be funny, or argumentative, I'm just thinking we couldn't possibly know that percentage if they are indeed undiagnosed.
Vicky
Caregiver
It's not that 50% of cases are undiagnosed, per se. They just could not identify the specific virus.
I see, I misunderstood what you were saying.
I can tell you that in the space of 3 months my son, who was at the time in the Army, received numerous vaccines (he was being shipped overseas), developed peritonitis, then sepsis and finally encephalitis (of unknown origin). While they were unable to diagnostically prove his encephalitis was due to a severely immunocompromised system, they did finally reach that conclusion. We will never know if it was due to the vaccines, due to the infection that resuled from the ruptured appendix, or due to a combination.
Vicky
Caregiver
I too misunderstood.
Dan, that wouldn't be "diagnosed" -- that would be identifying etiology.
From my point of view; Somehow specifically relating virus of an unknown etiology with an autoimmune disease is putting two things together that don't go together.
Not knowing what virus was the cause just means no lab test was done to specifically identify it.
When you have an infection in a cut on your finger - no one identifies just which bacteria it is - well, not unless it becomes a problem.
So - being diagnosed with having a viral brain infection (unless that was the wrong diagnosis) and not having the virus named, can't by some jump, be used to tag some sort of autoimmune diagnosis.
Now a virus could lead to an autoimmune disease.
But having a virus of unknown etiology can't in anyway be used to lead to something else.
Look at it this way.
You open a box and take out a new chair.
The chair is dry.
Since the chair is dry, can you somehow correlate that if the chair is dry, then someone used a rag to dry it before packaging it?
Well,maybe it was set and dried, maybe it wasn't. Nothing about receiving a dry chair offers you any information to be able to conclude it was wet.
Nothing about "viral infection of unknown etiology" can cause one to in anyway say -- "well that could mean autoimmune disease then."
Known virus or unknown virus -- the person can still end up with an autoimmune problem
Could a person be wrongly diagnosed with a viral encephalitis when what is really going on is an autoimmune condition? yes! -- but it stops there.
-dannon (not "medically informed")
I am fairly well medically-informed, not a medical professional or anything, though. Also, my experiences are with meningitis, not encephalitis, but the two are similar. I have some thoughts about diagnosis and treatment, maybe not directly addressing your question.
I have a profound distrust of spinal tap results due to my experiences. I had meningitis in 2003 that was called viral by all the doctors involved except the pathologist who said it was either viral or partially-treated bacterial meningitis, he couldn't conclude which. No bacteria was cultured and the couple of viral and fungal tests run were negative, protein was fairly high. However, after being horribly ill for several weeks I recovered drastically after just 24 hours on IV antibiotics in the hospital. I don't think that's a coincidence.
Then in 2008 when I had meningitis, it was diagnosed as auto-immune based on the fact that I had Addison's Disease which is an auto-immune illness and repeated cases of meningitis. I had my doubts, a lot of things just didn't fit with the Malloret's autoimmune meningitis that he diagnosed me with. I went ahead and took the large doses of steroids for several days, though, as instructed. This only made me much more ill from lack of sleep and inability to rest and I stopped them.
Many weeks went by with increasing purpura (large areas of my body were purple) plus all the classic meningitis symptoms, to the point that I couldn't take care of myself anymore. My boyfriend took me to the ER where they gave me a single treatment of IV antibiotics after he practically threatened them. Again, I got drastically better but one treatment wasn't enough to get rid of it. Again, cultures were negative. Weeks?? months?? later I finally got more IV antibiotics and again showed drastic improvement. I am pretty fuzzy on the time line. By then, however, it was too late because significant damage had already occurred.
That's a long story to say that basically my take is that the medical establishment places way too much emphasis on diagnosis and not enough emphasis on clinical results. My reports of what worked and didn't work - antivirals, antifungals, antibiotics, steroids, were ignored. If someone had just listened to me, I would have gotten effective treatment much earlier and wouldn't have half the permanent damage I have now.
If the etiology can't be established, empirical treatment should be started. The results of this disease, severe disability and/or death are just too severe for it to be left untreated because the cause can't be determined.
The doctors that I have talked to said that a couple of days of moderate-dose steroids (not talking mega-dose IV steroids) would improve auto-immune meningitis or encephalitis symptoms and wouldn't be a long enough course of treatment to significantly impair the body's response to infection. I haven't verified that for myself by reading the literature and I don't trust anything doctors tell me anymore. But if this is true, and no infection has been found, why couldn't a few days of moderate-dose steroids be tried and discontinued (tapered off) if no improvement results? I considered my trial steroids to be worth the information they gave me about my illness and what does and doesn't work.
Also, the consensus of the medical establishment seems to be that this disease is not infectious if the person doesn't experience catastrophic results within 24 hours after onset. That isn't my experience at all, and many doctors working with AIDS patients are finding this not to be the case. I am incredibly resentful that infectious causes were ruled out because of negative cultures in my case and I was left with brain damage because of it.
Just a few of my brainstorms.
Cathy
I understand what Dan is saying, and yes, I do believe that if undiagnosed originally then people could have had autoimmune encephalitis. I had autoimmune brainstem encephalitis. As of now, I have never seen or heard of anyone else with exactly what I had, but I know autoimmune encephalitis is not totally uncommon, but viral encephalitis is what people hear about. If mine wasn't detected early and I didn't get a spinal and all the blood work to determine why mine started (I had a recent ebstein-barr virus, but no white cells in my spinal), they would have assumed I had viral encephalitis that resolved before they found it in my spinal fluid. Instead, they realized mine was an autoimmune reaction to the virus that I had show up in blood work. Unfortunately mine was such a hard hit that they had no idea what was going on with me and I had to get a spinal and a bunch of other tests to figure out what it was, and still it was a long time before I got a diagnosis. At least I know that I have a pre-disposition to autoimmune reactions so I can take precautions now, and hopefully that will never happen again!
Add to the discussion