the build-up

Today is day 3 after diagnosis. I am still nursing one hell of a spinal headache from the tap. My emotional state varies from hour to hour, moment to moment, second to second.

It all started in January, as far as I can remember anyway. I would start an IV. I'd hold a patient's arm with my left hand, the IV catheter in my right. The needle would puncture the skin, I'd feel it pierce the vein and see the flash, then I'd attempt to thread the catheter over the needle into the vein with my right index finger. But my finger wouldn't move. Then it came back. So weird! This went on for a few weeks. One moment my finger worked, the next it didn't. When I would try to show a co-worker, it would be normal. I felt just a little nuts.

By March, it was continuous. I couldn't lift my index finger. No pointing at something, no flashing peace signs, no movement at all at the main knuckle. Typing became difficult. I had to learn a new way to start IVs, usually using my middle finger instead. Co-workers began calling it, affectionately, my "retarded finger." I had gone to see my primary care doctor for something unrelated and I mentioned my hand weakness before leaving. I was asked, "Does it hurt? Do you have any numbness or tingling?" Well, no. None of that. Apparently it wasn't significant enough to follow any further. I had an HMO at the time, so that meant I needed my PCP to take me seriously in order to get any further with figuring out what was going on.

In May I changed jobs. I went back to work in the ICU. That meant going back to my old insurance. A PPO!! My first step? An appointment with Dr. Isaacs, orthopedic surgeon. Surely, if it was something going on with my hand, he would figure it out. In mid-May, I had my first appointment. I stumped both the nurse and the resident. Dr. Isaacs came in, took a few looks, and squeezed a point on my forearm, asking if that hurt. It did. He said he was pretty sure it was a compressed posterior interosseous nerve. Surgery was probably going to be the key, but first, an EMG - electromyograph.

I had my first EMG in June on my right arm. Georgi came with me, as I was prepped that it would be a bit uncomfortable. "A bit." Whatever. It's bad enough having heavy shocks sent through my wrist into my hand. Quite worse having about 20 needle sticks over my right arm (upper and lower), neck, and hand. The worst part of it all was being scolded by the woman performing the test, saying I wasn't relaxing my arm enough, thus screwing up the test. Sure, I was crying. It hurt like hell. But my arm was relaxed when she said to relax it. I would later learn that none of it was my fault, that it was a pretty big deal that the test showed my arm still sending signals when I thought it was relaxed. Either way, the doctor doing the test confirmed that I was having decreased signals coming from the suspected bad nerve.

I was scheduled for surgery on August 8th. I ensured that all of the right people would be taking care of me, from anesthesiologist to CRNA to residents with Dr. Isaacs. I received a nerve block which numbed everything from my right shoulder down. For me, it was a pretty good experience. I was never completely out and never had any pain, save for Dr. Isaacs leaning on my pelvis every now and then. The only bad thing - nothing out of the ordinary was found, and because of this, the surgery was extended into a full exploration for anything abnormal. Today, this equates to a pretty ugly 6 inch scar on my right forearm. I went home with a large splint, a sling, a drain, and a nifty ball that gave me continuous dosing of numbing medicine. Long story short, never had any post-op pain (yay!), spent 4 weeks on light duty at work (read: "overpaid secretary"), and when all was said and done, no change. In fact, it only got worse.

On my 2 month post-op visit to Dr. Isaacs, I expressed concern that my right hand was worse and I was starting to get the same initial symptoms in my left middle finger - intermittent finger drop. At this point, I would expect many surgeons to say "well, just wait another month." Instead, he got on the phone that was in the clinic room and placed a direct call in the OR to Dr. Graham, a neurosurgeon with whom I've worked a few times and have incredible respect for.

I was seen the next morning in Dr. Graham's office. He greeted me and then, in his usual quiet manner, just studied me for a few minutes. I was asked to move my neck in certain ways, arms in other ways, and asked if there was any strange sensation. No. Any pain? No. No numbness or tingling? Nope. And you're sure, no pain ever? Not in the slightest. Words were muttered such as "motor" and "neuron" and "disease." Come again? I didn't quite listen that well during the neuro section of nursing school or anatomy and physiology. Dr. Graham said he was going to refer me to a neurologist, and that he wanted me to go the next morning but that it was a little bit of a drive. Ok, 1 hour? Try 3. Now, I understand that in the medical profession, there is a degree of professional courtesy, especially if you have previously worked with someone and are now being treated by them. Things are done in a more timely fashion than would be for most. But seeing a neurologist 3 hours away the following morning? The phrase, "what's up, doc?" comes to mind. I asked Dr. Graham what he was thinking, what his hunch was. He said worst case, ALS, and asked if I had heard of it before. Yeah. I wrote a paper on it in my 11th grade anatomy and physiology class.

The following morning, at 6am, Georgi and I left for the Eastern Shore to see Dr. Paschall. I was warned by Dr. Graham he was a bit like the doc on House, and that he very well may throw a cane at me, even though he doesn't use one. Well, he didn't throw a cane, but he was 20 minutes late arriving and was probably one of the most informal and loudspoken docs I'd ever met. I liked him! He spent almost 2 hours doing a full neurological exam on me. I failed in every way that he didn't want me to fail in. I had no abdominal reflexes. My Babinski reflex was doing something it wasn't supposed to do (again, I didn't pay much attention to the neuro sections in school). My knee reflexes were showing cross adduction, meaning he'd hit the right and the left would move, too. He said he wanted my EMG repeated, and this time to include all extremities. He also wanted an MRI, but was convinced he wouldn't get preauth from my insurance for another week or more. He obviously had not met my wonderful live-in social worker :) Georgi was on the phone right away with Anthem getting me preauth'd for the next day.

October 1st was the day I saw Dr. Paschall in the clinic. October 2nd was the day he decided to run every test known to mankind. October 2nd was not a good day. It started with an MRI of my neck. Hard to stay completely still when I have involuntary twitching. Dr. Paschall came down in the middle and was apparently upset that it was turning out to be a perfect MRI. Next was the EMG. Not as overly traumatic as the first, but definitely more painful in parts. Dr. Paschall did it himself and did a great job of making it as quick as he could. Still, it was a dirty EMG. Not good. Next it was down to the ER for a lumbar puncture and spinal tap. Pretty uncomfortable, but mostly when the needle hit a nerve and sent awful twinges into my right buttocks and thigh. I think I yelled "ow! my ass!" more than once, and was told to stop making Dr. Paschall laugh. The results came back - normal. Next was a chest xray and CT scan of my head. Normal. Go figure. In addition, about 15-20 vials of blood. My CK was the only abnormal value. Elevated = muscle wasting = another thing to rule me in instead of out.

At the end of it all, Dr. Paschall still wouldn't give the final diagnosis, still holding out hope that maybe something in my blood would come back to explain why a 27yo female was having these symptoms. Yet at the same time, urging me to get into Duke or UVA for a 2nd opinion. 2nd opinion, meaning he's given a 1st opinion?

Eh?

Come again?