I'd like to relate my experience in the hope that it might prove interesting and helpful to others.
About 10 weeks ago, I awoke in the middle of the night with a case of severe diarrhea that continued for a couple of days. I had eaten some chicken for dinner that might not have been quite fully cooked right before the GI attack and attributed the attack to that.
I hung in there for a week -- the diarrhea improved quite a bit -- but I could tell that my GI track was still not back to normal. I was also having other symptoms associated with food poisoning such as a slight fever and chills.
Sometime during the second week, I noticed a numbness in my right trunk that later also moved down into my right thigh. I thought this might also be associated with food poisoning but was concerned enough to make an appointment with my internist (primary care doctor). My doctor sent me to the lab for a full blood panel but everything came back normal.
The third week I was driving down the road and noticed that I was having double vision -- instead of seeing a single car in front of me, there was a double image of the car horizontally to the right. I went back to my internist and he said it was time to see a neurologist. I was also starting to have difficulty with my balance and with walking properly. At the end of that week, on Friday, I saw a neurologist and explained how my symptoms had developed. He performed a basic neuro-exam and scheduled me for an MRI early the following week.
On Monday morning of the following week, I noticed a numbness in my left upper lip while I was brushing my teeth. My smile was crooked and I couldn't spit water out of my mouth properly. At that point I decided it was time to just go to the ER. I presented myself at the ER, described my recent history of symptoms, and they performed an MRI that showed a number of "lesions" on my brain and spinal cord.
I spent 6 days on the neurology ward. The first 3 days were spent trying to diagnose me, trying to find out what those lesions might be. I was given all manner of tests -- two more MRIs (one a full body MRI), spinal tap, echo-cardiograph, ultrasound, and finally, a brain biopsy. For the brain biopsy, which required general anesthesia, they identified the most accessible brain lesion, drilled a hole in my skull, and stuck a very small needle bout two inches into my brain to remove a small amount of tissue from the lesion for analysis.
They considered several things, a few of which were ruled out rather quickly. Stroke, no; not consistent with symptom development and evidence of such not visible on MRI. Vasiculitis, no; can't remember why they ruled that out. Late-onset MS, maybe; but again, not consistent with imagining of the lesions. It came down to ADEM versus brain cancer (lymphoma), which is why they did the full body MRI and the brain biopsy. Both of those tests were attempts to find out whether or not I had brain cancer. They wanted to make sure that they sent my down the property treatment pathway -- the pathway for ADEM is much different than that for brain cancer. Fortunately for me, they couldn't find any evidence of cancer anywhere on my body, so almost by default they reached a diagnosis of ADEM.
My final 3 days in the hospital were spent getting 3 administrations of IV high-dose corticosteroids; they do this in the hospital for safety reasons because some people may have seizures or convulsions due to the high-dose steroids and they want to be able to quickly and properly deal with that eventuality.
After I was discharged from the hospital I was given an oral, tapering course of corticosteroids that lasted about 3 weeks.
I've been home now for about 5 weeks. My symptoms have generally improved. My balance and walking are significantly better -- I never knew it could be so satisfying to put my pants on standing up. The double vision is also significantly improved. I still have considerable numbness and tingling on my right side but that also seems to be improving, albeit gradually. I try to evaluate my condition week by week rather than day by day. From day to day, things can worsen; week to week gives a better picture, I think.
I had my first follow-up MRI last week. According to my neurologist several of the lesions were significantly smaller, although the did find one small new lesion that was not on the previous MRI. For now at least, he's attributing the new lesion to the tail end of the initial attack and not as a new attack, or recurrence.
I'm now cautiously optimistic -- my condition does seem to be improving -- but I'm certainly not cocky. I think the primary risk at this point is recurrence and possible development to late-onset MS, which would of course be a major setback.
There are a lot of things that I haven't mentioned in this original post, so if anyone has any questions, I would be happy to respond as best I can.