I'm circa 2 weeks from the follow-up with my neurologist to discuss the findings of my spinal tap and get my diagnosis of Multiple Sclerosis. Then I can finally discuss options for controller medicines. I've lost so much of in the last few months. In february I was stricken with what turned out to be a bout of MS induced vertigo. It baffled half a dozen doctors and had me bedridden for a MONTH. Then came the loss of vision in my right eye. That still isn't fully resolved. It still doesn't work.
What has been torturing me is that just the other day I felt another bout of vertigo coming on. I called my neurologist and they faxed a script for a steroid pack to my pharmacy. Now I'm in bed to avoid triggering it again. The steroid pack seems to be working. However, it's only been one full day (just two pills short of day 2) on the steroids. I can't say for certain yet, but it feels like it's helping.
When I was first told of my diagnosis I was crushed. I know a lot of people out there have said they've felt crushed, but if you haven't been given any kind of diagnosis of a permanent illness I don't think you can fully understand crushed. And the Dr. that told me my MRI showed clear signs of MS was about as concerned and delicate as a mechanic when he tells a customer he should consider replacing his brake pads. I was almost positive I couldn't drive home from his office. I could barely talk to the assistant who was attempting to set up an appointment with the neurologist. The drive home was bad. I had Slayer's "God Hates Us All" in the CD player, full volume, and by the half-way point on my route home I was screaming along with it, punching the steering wheel, tears streaming down my face. When I got home I pulled up to the curb, shut off the stereo and managed to navigate my way back into the house. I collapsed on the couch, a shaking, screaming, sobbing mess. The first few days were horrible. I couldn't get up, I couldn't do anything. I was useless. I felt as if my life had ended. I felt like that doctor had told me that my life was over.
My initial trip to the neurologist hadn't helped. They looked at the MRI and agreed with the first doctor. Then they ordered a spinal tap to be sure. Then they immediatly started discussing IV Steroids to restore my eye (the first doctor had cautioned me that IV steroids destroy the single blood vessel providing blood to the hip thus causing necrosis and leaving me needing a hip replacement0. It was all moving so fast and I wasn't even over the "I'm certain you have MS" (and they even showed me the lesions on the MRI). Everything was moving so quickly. I didn't have time to process. For any of you who haven't hada spinal tapdone (or an epidural for women who have given birth, though those are worse) let me tell you...the pain is horrific. The injection to numb it was excruciating. It felt like they were injecting liquid fire into the small of my back. Then when they stuck the needle in to do the spinal tap (aka "Lower Lumbar Puncture") it felt like someone parked a full-sized Dodge Duelly Diesel on my hip. Apparently the needle was a larger form of the same type used to draw blood. With this thing in my spine (in the envelope around my spine) I had to roll from my stomach to my side. Before I went down to get the puncture they took about a dozen vials of blood. If I hadn't been so terrified I would have insisted they at least leave me enough to get home. As for the aftermath my right leg still feels funny. The foot occasionally gets that feeling like it was asleep and the blood came rushing back in. The hip periodically burns in a similar way. It's weird. My cousin's wife had one before and she said that she would get a piercing pain around the injection sight that would leave her immobilized sometimes when she tried to sit or stand.
Then I got the IV steroids, three doses in three days and then a 6 day oral dose pack. At this point, the diagnosis still new, and me still scared s***less my wife was in Florida on a trip to see her family that they'd been planning for months. While I was getting a needle in my spine she was touring the Daytona Speedway. Nice, she gets to see Jamie McMurray's winning car and I get Dr. Josef Mengele wedging needles into my back. I'm a little resentful but I really can't hold it against her. It was to see her father. She hadn't seen him in almost a decade, her grandparents in an even longer time than that. Anyway, for those of you who haven't had IV steroids, they hype you up. I didn't feel it at first, though I did notice I was eating a lot more than usual. Later that night I did notice I was wound up like a spring. I wanted to go in the garage, crank up the terdmill, and run like hell. I didn't, but that's about how wound up I was. The problem was, espcially after the 3 day IV treatments, I was in my house alone. I would attempt to improve my mood but the thought that these pills and these needles are my life now would start eating at me. I did just about everything I could to distract myself. My desktop is shot and my wife took her laptop to Florida with her. However, I had my Wii and the Netflix disc. (IMHO the Netflix Wii disc isn't as good as it could be. It has no real browsing capabilities with nothing more than "Previously Watched" and "Based on your interest in..." as the bulk of it, just download the internet channel and use that) I wore that poor thing out. I finished all of the episodes of Monty Python and watched GAWD Awful B-Movies from Troma (the studio repsonsible for The Toxic Avenger Series) like Mother's Day, Hellblock 13, and Surf Nazis Must Die. I watched about 20 episodes of Dilbert and the few MST3K's I had left to stream. It wasn't enough. The thought that my life was over kept creeping back into my head. I broke down randomly and would catch myself crying out of nowhere.
Now after a little while this was more the s*** in my head. The neurologist had given me a few things that helped to keep me from going to the nearest gun store, getting some ammo for my Glock and then force-feeding my skull a piece of copper-jacketed brass. They said they didn't see any on my brainstem so the condition won't paralyze me. They said it wasn't on my frontal lobe so I won't go crazy. It helped, but my mind is really hard to silence sometimes.
Now I have the second bout of vertigo and I keep getting that feeling that "this is my life" now. It's getting easier to cope with now that my wife is here with me, but the bills are still piling up. I need the diagnosis because that can take care of the bills for me. But I need that diagnosis. And I need some controller medicine so I don't keep losing my eyesight or getting bouts of vertigo.
I want to be a tattoo artist. I've even got my licence to do it. But with this coming up and the potential for it to affect my motor skills has me freaking out in my weaker moments. I've been practicing and trying to find friends and family to tattoo. I also talk to my tattoo artist/the man who taught me to tattoo (Ray Frost) whenever I'm there. I like to know how he works and how he does what he does. But again, this MS thing has me freaked right the f*** out. It keeps creeping in there. I can't out-run it and I'm sure I won't feel better until I get the controller meds and can see that it's doing it's job.
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