Between the years of 2001-2004, I was poked, prodded, MRI’ed every 6 months, spinal tapped another time (to make sure no Lyme disease bacteria were still present in my spinal fluid), drawn blood from so many times I can’t even count (!), and seen by two MS specialists and one rheumatologist. My husband and I actually liked the rheumatologist the best and almost hoped that the problem stemmed from his area of expertise. Seriously, the MS specialists were okay, but not at all definitive. They kept saying “probable multiple sclerosis”, but would not commit to the disease, since I had only a few lesions/scars on my spinal cord nerves. It was everyone’s theory to “wait and see” what would happen next (a scary prospect from the MS patient’s perspective.)
In the meantime, I was having very bad headaches that came out of nowhere (I was never one to suffer from them unless I was sick with the flu or such.) They seemed to start and then escalate when I was out in the sun. Authorities on MS will say that headaches have nothing to do with the disease, but I have read so many message board posts that indicate the opposite. On more than one occasion Bill took me to the ER, just to get a strong painkiller for a headache that wouldn’t go away. Demerol, given as a shot in the butt, worked great. Incidentally, the headaches tapered off and never returned after about a year, much like some of my other MS symptoms. Go figure….
Another odd thing I developed was something like restless leg syndrome. It happened the first time after coming back from a family trip to the Outer Banks (2004.) Bill and I were sitting on the couch and my left leg just jerked out, like I had just had a reflex test. Of course it was late spring again, my time for relapses. This left leg spasticity would usually happen at night, before bedtime, and then in bed as I was falling asleep, or trying to. Very annoying. It continued on and off for the next year, then disappeared for a while.
During this period of time, I also gradually noticed that I had to go to the bathroom more frequently. Not because I was drinking or eating more, but because I felt more of an urgency. Sometimes I felt like I would burst (particularly my bladder) if I didn’t get to a bathroom. Then I would go and be surprised that I didn’t have a full bladder, just the urgency like I did. Strange. I later learned that these bladder and bowel issues are some of the most common MS symptoms, especially for someone who has damage along the spinal cord nerves. But still no definite diagnosis from the “specialists.” My general neurologist followed their lead.
In 2004 I had to stop working as an ultrasound tech. I tried per diem at two other places, but I could not keep up with the work load and found myself shooting my mouth off about the ridiculous pace. True, the demands were ridiculous and I can find at least 5 or 6 techs that will back me up on this, but to be fair, it is the nature of the job, and it was time for me to say goodbye. This is when I turned to the library, and I started volunteering.
Getting a definite MS diagnosis would finally happen in 2005, after an undeniably “MS-induced” attack. It led to participation in a clinical trial for Betaseron v. Copaxone, 2 multiple sclerosis medications. But real help and understanding by a true MS specialist (my current, dear doctor) would not happen until a bit later….
