Not that I haven’t heard this question before, but I am left dumbfounded. Is every disease like this? Since Day #1, the doctors have said “these are the drugs used to treat MS. Read about them, and tell me which one you want to take.” Does anyone else find this as comical as I do? Really, someone must be out there. And so, how it went today. Same deal, only with a new doctor. He said “Only you know if your new symptoms are concerning enough to either a.) switch to Tysabri; b.) start 3 to 5 days of IV steroids, or c.) start a 10 day titration of oral steroids. So, do you have any questions about your options today?” Well, um my left front head down to just below my chin is numb. Oh, sure, I’ll close my eyes. Right. So you’re going to prick several locations on my head, face and feet and ask me if it feels like the sharp of a safety pin or the rounded end of the safety pin. I like that you took a pin out of the official supply drawer tray marked with a label maker tag of ‘SAFETY PINS’ in bold black on white tape. Much more official than the doc at Hopkins reaching in to the crevices of his lab coat and pulling out belly button fuzz and tossing it on the floor after a roll between his fingers–and then, reach back in to the pocket not even trying to suppress the sound of his hand rattling through change before he finally pulled the official safety pin pricker out of his pocket. So he starts pricking away and I with my eyes closed, trying to keep up with his fast rotation around my head and face start telling him whether or not it’s dull or sharp. Hmm, “I detect significant numbness in the left region when compared to the right.” I say, Oh??? “Yes, I find it interesting because the active lesion which I saw on the films, was on your right pons–that’s pretty much the brain stem–and this numbness is perfectly consistent with that type of right side lesion.” This confirms that I like this doctor. He confirmed that he listened carefully to what I said, and he must be smart because he remembered what he saw on the MRI without even a twitch or temptation to look at his notes. And, of course, the clean safety pin–which, much unlike the Hopkins doctor who dropped his back into the treasure trove of white pocketness–he immediately tossed it in the trash can after his very scientific evaluation of me. Fine. My decision is made: “Pat, I’d like IV Steroids for 500, please.” Next stop: Infusion room. In the past, I’ve always sat in the community infusion room, but today I was confined in the solo sitters’ room. In a nice comfy padded chaise with crisp, white sheets and a covered pillow too. Top right hand today. Ooh, and I was given the remote to freely channel surf during my treatment. I have arrived. Where else would I be able to watch a 28- year-old episode of Cheers? It was the one where Sam calls a meeting in his office to discuss hiring a new bartender and nobody shows up until he hands each of his employees cash payment upon attending the meeting. I could not sit through the moronic commercials in between segments, clicked the remote like a maniac and wound up losing track of time, so by the time I clicked back, Sam had already met, interviewed and hired Woody Harrelson. Bummer. I used to L-O-V-E Cheers. Chris and I loved watching it together BK. Before Kids. Did I mention that I took a selfie during my hook up and that I’m getting old. Actually, not getting. I look old. My eyelids practically sag over my eyeliner barely revealing its color, and my neck has an actual curvy wave of sagging wrinkles on it. Hmm, for tomorrow’s infusion, maybe I’ll dry my hair with the round brush, some mousse and a shot of hairspray and retake this shot. If I still look old, then I guess I am old. And, if there is a scarf around my neck, I’ll know why.
The Radiology Assistant : Spine – Myelopathy. Very informative explanation with diagrams and actual MRI slides explaining different types of demyelination.
Interesting information I found through a search on “how to read an MRI report” while trying to decipher a radiologist’s report on my most recent brain and spine MRI. Note, don’t try this at home. Insanity may get the best of me waiting the six to see my doctor at Hopkins for his real professional review and interpretation of this report. All I see on this report are multiple uses throughout of the words ‘abnormal’ and ‘new foci.’ And to think: I tried very hard to get out of picking up this report. I knew I was going to get bad news. I have been dreading the emotional setback these things seem to trigger in me. Next time: I’ll just go with my gut feeling and forego MRI’s altogether. I really don’t need reports and pictures to tell me something is wrong inside my head (literally). I already knew. I know exactly where my pain, numbness and weaknesses are. I don’t need justification anymore than I already have. I’m good. Really.
This afternoon, on a Sunday, right in the middle of football (I swear I did not even think of this when I made the appointment) I had a terrific tri-MRI. That’s TRI for Head, Neck and Spine. The trifecta. The grandaddy of them all. A full three hour photo session. I am so lucky to have been able to have Rx on board. One before I left the house and the other in the changing room at the hospital. For the first time ever, I had a choice of which fashion gown I wanted to wear. Having only had one to choose from in the past, I chose to veer away from the standard Army issue battleship grayish-bluish to a pretty little white-n-purple print. Oh, I am so blessed to have such a great Army hospital so close to my home. Or is it, that I just didn’t have a say the matter, and it happens that it really works to benefit our family greatly? Whatever it may be, I’m blessed. After my first two MRI’s way back, I quickly realized that there is no good reason for my husband to be sitting in the waiting room for me. We live less than a 5 minute drive from the hospital, so we do a drop off and text to pick up routine that works quite well. If I did not have meds on board, I could and would do the drive myself, but boy, you should have seen my eyes in the changing room. They were completely bloodshot and my pupils were the tiniest they have ever been. I even stood at the mirror real close and opened and closed my eyes and covered them with my hands and then popped them open real quick to see how big my pupils got in the dark. Not very. Oh, come on, you’ve done this too before I am sure! So, the techs are so amazing. The first one, Scott, had me up in the chair to insert an IV and squirt a syringe or 2 full of saline into my arm. Yep, it was in properly. I must admit, I was quite impressed with his work. Too many times have amateurs stuck me inappropriately complete with pain, and hot swollen arms. I can practically do the darn thing myself at this point. Ask any other MSer and they will probably tell you the same thing. Between labs, solumedrol, and other drugs, we get stuck quite often. Oh, and I certainly can’t forget that wonderful GAD contrast in the middle of an MRI. Okay, so, I was VERRRRRRYYYY relaxed for this photo shoot. For the first time, I didn’t have the usual quiet panic attack when my head was locked in the Hannibal Lector mask. Then began the excessive banging of what I guess is a hundred magnets swirling around my head–but again, meds were so perfect, it did not even keep me awake that first hour. Is it possible that the changing charge of the protons and neutrons in my head made my back pain actually disippate during this phase? Then the very narrow bed of the giant white donut machine was slid out, and Jason, the tech who had an hour before rolled out an invisible red carpet for me to strut down to show off my haute couture hospital gown, unlocks and removes the Hannibal Lecter mask from my head. I’m told not to move, so I jokingly keep my teeth clenched and tell him I’m ready for my close up, and to please turn up the volume on the magnet banging, cause they just ain’t annoying me enough! Now he shoves some cushy foamy rolls around my head and neck. Again, don’t move. This time I’m in for just 30 minutes of loud banging which sounded a lot like: Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, Meh, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, dd, ong, ong, ong, ong, ong, ong, ong, ong, ong… you get the picture, right? I’m thinking for sure, he sees some spots, because he radios in to me and tells me they have to review the pictures before they go any further. Great. And a few more shots, and I’m slid out again. Now for the GAD contrast. No bigge at all. For the first time ever, the dye does not even feel all hot and swirly through my veins. I ask Jason if used the usual dye. Yes, Ma’am, nothing but the best for my patients. Here goes. The next hour and a half. Just before sliding in, I ask for the panic button to be put into one of my hands I have intertwined with the other one. Just in case. I’m not planning on panicking, but just in case I can’t sit still for another–wait–Jason, I have to pee, is it a huge inconvenience to get up now before the next set? Actually, it’s a perfect time. Wheweee, I had trouble sitting up. My eyes are very red when I glance up during my hand wash. Oh, shit, was I supposed to take out my contacts? Oh, well, no point asking at this point. And so the photos continue. This time just a little over an hour, and I’m more bored than anything. So, my mind wanders and I seriously start thinking about my spine. The numbness in my left leg sometimes and the electrical sparks across the bottom of my left foot. That right knee that has a mind of its own and often makes me look like drunk giraffe in the middle of a crowd. The pictures of my spine will explain all of that. I’m not sure I even want the results. I totally understand why some people choose not to have MRI’s at a certain point in their MS journey. They’re right, what is the point? My mind is still wandering. Maybe I’ll have the doc just give Chris the results and I’ll sit in the waiting room. Why should I know? It could be a major emotional setback for me that I really don’t need. It took me a long time for emotional recovery last Spring when I found out I had spine spots, neck spots and more brain spots. I’ll think about this all week before my appoinment. I took another photo. This one is of the order for today’s shoot. On the catwalk. I strutted my stuff on the catwalk to the MRI center, oh yeah, you know what I mean…