I finally got the answers recently (On April 10, my birthday) after all the medical testing these past difficult months.
The Lumbar Puncture results were positive for the banding that indicates MS. The doctors studied all the MRI’s I have had within the past 5 years (including digging up the MRI’s I had from my participation in a medical MS study). Their careful and thorough examination of the MRI data (by a number of neurologists) have determined that I have only ONE lesion - a large one on the temporal lobe, and they do NOT think it has grown, as previously thought. Otherwise, my brain and spine are clear. Given the results from the puncture, the doctors are 99% sure that the lesion is an MS lesion, and are not advising any further invasive testing (no biopsy), because the place of the lesion mass (over my temporal lobe) is too vulnerable to risk damaging (memory, cognitive, speech) unless they were concerned that it was something indeed life-threatening.
All this means: I do indeed have MS…however a rare form of MS called “tumorific MS”. (You know me - can’t be in the mass “norm” - always gotta be unique!Basically, it is a form of MS with only one lesion - an a-typically placed lesion to boot.
The doc feels that my concussion last year, which created counter-coup damage in the lesion area and permanent inner ear damage on my left ear, shook things up considerably. Given my inner ear damage, that concussion was fairly severe. Concussions affect MS brains harder than normal brains - and there is no way of knowing whether or not the cognitive damage from that concussion will ever subside or is permanent. Only time will tell. (And he says that as long as I don’t make concussions a habit, my MS should be relatively stable.
SO - bottom line: managing my fatigue and pain are absolutely critical to my ability to work and function as normally as possible. Now that I have answers, and know what I am dealing with, I can move forward.
Part of me is disappointed, but a bigger part is relieved. No more poking and prodding by medical experts, and I have my life back. Yes I have MS - I have had MS for years. This experience has underscored firmly for me that I need to put managing my fatigue and pain on the top of my priority list in order that I am able to care for my family for years to come, and continue to work to support myself and my children. That means maintaining my new lifestyle changes - reducing stress, exercising with moderation, continuing working from home, carpooling and the like. The key is life balance - that is my priority.
Got the T-shirt. Got the Hat. I am still in the club!