Your story is very moving for me, because I have had an experience that is in many ways similar. Almost exactly a year ago (I turn 67 in a few days), I came down with a severe gastrointestinal disturbance that lasted several days. Over the next few weeks, I gradually developed neurological symptoms -- difficulty with balance and walking, paresthesia on my right side, headache, and double vision in my right eye. I had seen my PCP a couple of times during this period and he eventually set up an appointment with a neurologist. I woke up one Monday morning and when I brushed my teeth I couldn't control the facial muscles around my mouth. Even though my appointment with the neurologist was the next day, the mouth thing scared me and I went immediately to the ER.
In the ER they gave me an MRI. Shortly after I got out of the tube, a doctor came up to me and said, "You have multiple abnormalities on your brain that look exactly like the lymphoma that killed my mother." No kidding, that's exactly what he said and how he said it. I'm still pissed off when I think about that, so unprofessional.
I was admitted to the neurology ward and over a couple of days received several tests, the purpose of which was to decide if I in fact had cancer or something else -- late-onset MS, ADEM, a couple of other things. Finally, I had a brain biopsy -- they put you under, drill a small hole in your skull, push the needle an inch or so into your brain, and grab a small amount of tissue.
Shortly after the biopsy I was visited by one of the neurologists -- I had seen several in the hospital -- who said I had brain cancer and would be seeing a neurosurgeon shortly. I saw the neurosurgeon, who said I would also be seeing a neuro-oncologist. Major bummer.
Then something really weird happened. About 20 minutes after my little tete-a-tete with the neurosurgeon, another neurologist came into my room and told me, "You don't have brain cancer, you have ADEM; the pathologist misread the slide from the biopsy." At that point, I was like, "Okay, whatever."
They kept me in the hospital, giving me three days of IV methylprednisolone. After that I was discharged with a three-week course of oral prednisone to take at home. That's all the meds I've had and it's been a year.
I have recovered quite a bit -- I'm back at work -- but I still have some residual symptoms -- fatique, but that's gotten a lot better; minor headache, kind of like I've had a little too much to drink; minor numbness, which for some reason seems to move around a little; balance and walking much improved, but I still have a little of a "drunken sailor" at times. Some days my residual symptoms are worse than others; I have good days and bad days, which can be worrisome. I try to stay optimistic, telling myself that this is all part of the healing process, and in absolute terms I really have improved a significant amount over the past year. Based on the admittedly limited reading I have done, I have come to this conclusion: on an individual basis it is impossible to predict how complete one's recovery will be and how long it will take. We read about "averages," but those are virtually meaningless to the individual patient, in my view. Nobody really knows. I've got my fingers crossed about remylination and continued healing.
Anyway, take care and have hope. You may still be gradually improving. I'd appreciate any comments or questions. This support group and message board has been very helpful.