And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.
Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.
While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.
About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.
The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.
Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.
THE OTHER SHOE DROPS
I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.
Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.
He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”
There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.
In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.
The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.
I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.
So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.
My friends tell me if anyone can handle this, it would be me.
Time will tell.