... so I feel like I am making progress.
Being befuddled, I missed the turn-off and ended up driving the loooong way to the neurologist's office. I got there, and went in, shaking a little, leaning on the elevator wall ... partly because standing up straight was not feasible, and partly to gain my composure. My sister, Mel, had been talking to me in the parking lot, giving me a last minute pep talk, giving me the psychological equivalent of twitching my collar straight and smoothing my lapel, looking me over with a critical eye.
The office was empty, but there were a LOT of pamphlets, mostly on MS. I got to read an article by some comedian who has MS. I learned that Teri Garr has MS. Which I think I knew already. I felt a little like it might not be so bad to have MS, especially if it was the remitting kind, where you have symptoms and then they go away. Maybe I could live with that.
My goal was to get prednisone, even if I did not have MS. I had been reading on the Internetz that early treatment was so important that some physicians thought you should get treatment even before you got a diagnosis. I was having the distinct sensation that I was having my neurons demyelinating, with sad little wails and ineffective, disruptive fizzing. They were unable to talk to each other any more and chaos was reigning.
I kept squinching my eyes shut, one after another, to see if my vision was still blurred.
It still was. Optic neuritis ... it had an ominous, final tone to it. Yeesh. I like my optic nerve. I wanted it to be happy and functioning. And optic neuritis is supposed to be painful. I am not very brave ... pain and decline in function? Not bloody likely. I am not signing on for that. Nuh uh. Nope ... no way, Jose.
And my left arm was going numb along with my left leg.
I remembered sitting in the oncologist's office with my sister, Cynthia, when she was going through her tests for cancer. People always say that it is harder to watch someone go through something frightening like this -- that it is easier to be the victim. I don't know if that is true anymore. As a family member, I had a task -- I was charged with a sense of protectiveness and advocacy. I would have knocked down the oncologist if my sister had said it would make her feel better.
Being the patient just feels ... pathetic. And like you are a supplicant. And a wanker.
Finally, I got called into the office and I thank the neurologist for seeing me on such short notice. I discuss my weird symptoms and at first, she is looking at me as if I am a bit of a lunatic and exaggerating what seem to be relatively mild symptoms. I mean, she sees people with traumatic brain injury and stroke. I am just having some mild word-finding difficulties. However, the fact that I have a Ph.D. and not one, not two, but three master's degrees, convinces her that my decline, although relatively small, is a substantial change for me, and she does a good, thorough neurological exam. I am hyper-reflexive and uncoordinated. She has me walk a straight line and I can't. She has me close my eyes and walk a straight line, and I get lost. Literally. I took two to three steps and could not figure out where I was -- I was completely disoriented.
The neurologist, Dr. P, begins to talk about the MRI and I asked her if she could walk me through it, because I wanted to see what she meant. When the be-speckled images come up, her statements kind of knocked me for a loop -- she said that she did not think it was MS and if it was MS it was atypical. The MRI did show lesions, but they looked old to her and were "not where MS lives". In addition, they might just be signs of aging, but that the lesions looked like what she would expect to see in a 65-year old woman. But, I protested, I am not 65! She blithely ignored the sounds I was making, equal parts protest and affront.
Bewildered, I asked her what else would be causing the symptoms, and she said that it might be connective tissue disease -- something vascular -- like a dissecting artery.
Waaaaaitaminute! Dissecting? Artery? I felt woozy. She explained that in some auto-immune diseases, the connective tissue in the artery separates. What kind of connective tissue diseases, I ask feebly, trying to sound interested rather than panic-struck. Lupus, she says.
As little as I know about MS, I know less about lupus. I think that a character on One Life to Live died from it in the '90"s. After thinking about it for a moment, I ask her which she would rather have, MS or lupus. She clearly does not want to answer the question, but admits that she would rather have MS, because you regain function. The treatment is much tougher for lupus ... low doses of prednisone for a couple of days for MS, massive doses of prednisone for weeks for lupus.
Prednisone is what made Jerry Lewis blow up like a blimp. I will look like a puffer-fish. I have an image of myself, drifting along like a Macy's parade balloon, bobbing gently along, hands swollen like Micky Mouse, face as round as a pie plate.
On the laundry list of lab tests, there is a specific test for lupus. Dr. P is not going to be my primary neurologist, because she says that I will need a lot of treatment in the beginning, but that she is getting the ball rolling so that the neurologist that I will be seeing will have the preliminary stuff done. I tell her the name of the neurologist at Loma Linda that I will be seeing and she thinks him a good choice.
In addition for blood tests for lupus, Dr. P says that I need to go get an MRA (which is like an MRI, but for arteries). Ordinarily, if it was thought that I had MS, I would get a lumbar puncture -- otherwise known as a spinal tap. But she does not think that I have MS, so she is going to hold off on it. It is no good unless you are in the middle of an active MS episode, anyway.
I am not sad at missing out on a spinal tap.
I rush over to the imaging place and, as I drive, I notice that the left side of my face is getting numb. I feel my cheek with my fingertips and it feels funny -- puffy -- like when you get novocaine at the dentist. I went to the wrong place and by the time that I get to where I am supposed to be going, the radiologist is just about to leave for the day. I ask if they would just wait five minutes more so I can get this done tonight. The radiologist kindly agrees and I am fed into a tube and heavy metals are injected into the arteries in my neck.
It is not as bad as the MRI, and it is an interesting sensation when the metal flood my head. I can smell the metal and taste it. My tongue is a bit hot. It is a little disconcerting as the heat floods my face and head. I can feel the blood thrumming under my skin, full of speckles of metal. I almost fall when I get up. I can't think of anything funny to say.
The radiologist is very kind and sympathetic and says that he will get the results to the neurologist first thing in the morning. I must have looked a bit done in, because he patted me on the arm when I left and told me that he would rush it. I thanked him. I called my husband and told him what was going on, and he sounded a bit lost. His usual question is something like "but what does that mean?" I called my sister, who was appropriately horrified for me.
Sometimes you want someone to be horrified for you. I told her not to tell me anything about lupus, because I did not want to know. I could hear her typing into the google search box.
So, I drove the hour and a half home. I did not want to have lupus even more than I didn't want to have MS.
Is it too late to ask for MS?