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!