ADEM and viral infection still 3 years ongoing

Hi All

Some of you already know my husband’s story. I have a new appeal out there to all you ADEM sufferers… Has anyone experienced something like what Brian is still going through 3 years down the line?

In summary, my husband’s ADEM was triggered just under 3 years ago by an ongoing viral ear infection. He was a healthy and fit 43 years old, no smoking and very moderate alcohol. Then the normal ADEM story you all know… He has been hospitalized, MRI’s, lumbar punches, bloods, a few admissions over the years for intravenous steroid drips of 5/6 days at a time…
However to date no-one has actually investigated the virus itself and I am hoping against all hopes, that a proper investigation in to the virus might actually lead to answers or a solution to at the very least stop the destructive course that this virus is following through my husband’s body. He is constantly having “new” episodes, and the ear with which the trouble started, is still playing up, and it seems to be spreading around his face and head area.
He has these lesions/ sores that break out, first starting inside the left ear, then slowly spreading to the outside, facial area, neck and now on the scalp area. These sores ooze a clearish/ brown/ yellow fluid (which I thought was Lymph) for a fairly long period of time. There is a very strong offensive odor associated with these lesions. Then eventually they start bleeding, and thereafter scab, dry up, peel and then heal up for a while. Currently when he wakes up in the mornings his head is actually glued to the pillow from this stuff. The smell is like an acrid aroma. He has extensive peeling all over his face, ear, head and even neck area. He has a fine pimple like rash on his body. His other symptoms are all related to the ADEM, all neurological issues. Like balance, tiredness, sensitivity to heat, even the slightest breeze send him in to pain, pins and needles throughout his body, extreme skin sensitivity, electric shocks of pain that shoot through his legs to his toes, hands sometimes, especially the left side always, going back to that ear issues… Then more severe, he has loss of feeling in limbs where he actually collapses… His cognitive behavior still seems fine.
His Neurologist is Dr Judy Green at St Aug in SA. She has also called in Prof. Bill (who is considered to be the top Neuro in SA) to oversee the case, although his diagnosis strangely is NMO – Devics disease… Brian has even had Rituxumab (Mabthera) chemo treatment in an effort to stop the progression of the disease. Her thoughts are that all his symptoms now are the body trying to get rid of the toxins, from the disease, the meds and the chemo… His last chemo treatment was in Feb this year. She cannot confirm his prognosis. Interestingly, he has no visual issues with his eyes, which seems to rule out the NMO which the Prof seems to think he has.
My gut feel, as the one person that has watched him fight this terrible disease over the past 3 years, is that this virus that attacked him in the first 3 to 4 months of 2014, is still active and is attacking his body. So as much as Dr Green is trying to treat the neurological results of this disease (of which they say no prognosis or cure can be confirmed), and she is equipped to medically do so, I do believe the root cause, the virus, is still well and firmly active. My concern is 2 specialist both have a different diagnosis, keeping in mind that both diseases are very closely related in symptoms, with other diseases like MS. So it is very difficult to get a correct diagnosis. They are doing the best they can. However they are not viral specialists, and I do believe that in order for Brian to have any chance of living a better quality of life, or at this point even having a future life with our 2 boys and I. I truly believe that Brian needs to be treated for the virus which I think is being overlooked. He is currently on so many meds to suppress his body’s autoimmune response, and the damage it’s causing to his body is already becoming clear. He now has fatty liver disease caused by 3 years of strong steroids…
Has anyone else had a similar experience? And do you have any suggestions on the kind of DR we would look for, that would assist with viral infections, research etc… My hope is that we find someone that can actually do bloods and identify the virus, then give him medication that can destroy the virus or at the very least, suppress the virus indefinitely… Then at least he can actually get on with some of his life with some normality, and learn to cope with the remaining effects of the ADEM. Currently he is too embarrassed to even go out in public because of the lesions all over his face, head and body, besides which the pain of being outdoors is too much for him anyway. He cannot even attend our boys sports matches to even watch for a short while. My boys have essentially lost their Daddy, even though he is alive, and walking. He is not living… 
Thanking you in advance for taking the time to read Brian’s story! Any advice, suggestions or assistance would be most gratefully accepted!

Oh my gosh!
I’m quite new on this site and hearing just a snippet of your story is heartbreaking.
I’m so sorry to hear that your husband and you all are suffering through all of this!

I suffered from ADEM just two years ago now. I was comatose for 3 weeks, paralysed on waking and still have many many residual effects.
I got my feeling and movement back after having Steroids for 6 months but still can’t walk properly. I’m in pain 24/7. If I listed all my health problems now it’d take me ages to type them.

The lesions in my brain and spine are still there and I have new MRI’s every 6 months to check for any changes. If I develop new ones it’d be MS but so far none have shown up (God willing nome ever do!)

I haven’t heard of anyone with these symptoms your husband has. But then again I only know of two other people who’ve had ADEM and one is a 7 year old.

My ADEM was caused by a virus that a tick was carrying. My Neurologist disagreed and said it was HSV virus but that showed up negative after 3 lumbar punctures plus it wasn’t caught at the time. I’d had HSV for the previous 15 years.

A different Neurologist said it couldn’t be HSV and would have been from the tick bite (which happened 4 days prior to starting to get a bad headache).

I’ll pray that you get some solid answers and soon! 3 years with no clarity is 3 years too much!!

Lou x x

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I would hope your neurologists have had (or would immediately have) an infectious disease specialist consult, do labs to check for viral antibodies, do tests on the fluid from the lesions, etc. etc. If there’s a virus running rampant they can give a viral suppressant perhaps. From

look at diagnosis and treatment paragraphs. Are you near a teaching hospital? Sometimes they have good minds on many issues and different specialties, the latest in research. Definitely Brian needs to find some good diagnosticians to figure this out. What suffering…I am hoping you can find answers soon on neurologic and infectious disease fronts. Sorry, but I think the right doctors might like to tackle this challenge!!!


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My heart goes out to you, your husband, and your family. As an acute hemorrhagic leukoencephalitis (disease very related to ADEM) survivor/sufferer, I and my wife understand the frustration of trying to get a proper diagnosis and treatment. We have two small children. I have executive dysfunction, cognitive/neurological damage, and various health issues related to the disease and stroke.

I don’t know what kind of insurance you have, but I hope you have been able to go to the very best infectious disease doctors in the area (I think you said San Antonio). They have found nothing? If not, you MUST make that a top priority.

If there is anyway you can swing it, and if you have the insurance that will cover it, I highly suggest you consider someplace like the Mayo Clinic. To get into the clinic (and you’d probably need and want to go to Rochester) your case would have to be referred by your doctor and accepted, but that sounds pretty easy in your case. It was in mine. You need to go someplace that will look at EVERYTHING from the very beginning, question everything, and maybe even re-diagnose. You really, really need someplace that takes a comprehensive approach to treatment, where doctors of multiple disciplines actually meet with each other and discuss your husband’s case. That is not the way doctor’s operate today. For example, you should not have to tell every single doctor every single time every single medication your husband is on. In my case, even within the same “system”, doctors did not effectively communicate. Each doctor was on his or her own island. The kidney doctor on one, neurologist on another, urologist on another, GI on another, etc.

If Mayo clinic, Cleveland clinic, John Hopkins, etc., are not places you can consider, maybe the University of Texas in Austin has something. Or maybe someplace closer to home? Maybe UCLA? I do not know. You may have to leave your home area. You may have to do yet more research (ugh!). You have to at least find an EXPERT in ADEM/demyelinating diseases and one in infectious diseases. The beauty of a please like Mayo is as you find you need other experts (and you probably will or those doctors may tell you do) they are right there and become part of your team.

I am not going to say that going to Mayo was not a pain, was not expensive, and was not at times very frustrating. It WAS all of the above, But in the end it was worth it.


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Thank you so much for taking the time to write to me. Unfortunately we do not live in the US, and this is one of our biggest problems. We live in South Africa – Africa…
The disease is still relatively unknown here. However the neurologist we are seeing has treated ADEM and MS, so she does know a fait amount. The problem in this country is to find a team to treat the case, because that is the best options for treatment. We cannot find an autoimmune specialist at all here. And on our salary and the exchange rate, going overseas for help is not an option, sadly so…

I have contacted a Virologist recently, he works for s state hospital in research, and he has agreed to discuss our case with colleagues to see if they have any ideas or suggestions.
Hold fingers for us…

Yes, I have found that the path on this disease, as it seems with yours, is extremally difficult. And you cannot give up. You just have to keep exploring and researching. I feel like 3 years on I am almost equipped to go in to the medical field of neurological and autoimmune disorders. My youngest is Diabetic type 1 since age of 2 brought on by a severe case of Chicken Pox. His body went in to full attack mode and over a period of 3/ 4 years it destroyed his pancreas quietly without any of us knowing… So my research on autoimmune diseases and causes has been quite extensive. Unfortunately it has not helped my son or my husband, but I will never give up!

So sorry for all your suffering, including your family. Will keep you all in my prayers, my list is long! Far too many people and animals suffering from unexplained diseases, one wonders where this is all taking us?
Keep faith and hope!

Thanks again :slight_smile:

Take Care