I moved my injection time up yesterday. I started getting the same type of headache that I did Monday. When I woke up though, no flu. Every once in a while I'll do an MS search. Consequently, that's how this blog got started. I read someones blog and thought "What the hell?"
Searching more through that blog, there was a link to someones web page that takes the pragmatic view of MS. I read it and it wasn't the "everything is coming up roses" that we are so used to getting. I use "we" because I don't know what else to refer to myself as. I have no active lesions and the scar tissue from the ones I did have are old. The myelitis is the only thing I have going on. More on that later.
The theory is that MS is auto-immune and on this web page, I have to give the guy props because he did his research, back tracked through his life to a potential cause. Transverse myelitis can be caused by an infection and so MS might also. Something triggers the body to go into overload and attack itself. I immediately thought of two things: I had the chicken pox when I was 15 and when I was 18 or so I went off in the woods and had so many chigger bites that my lymph nodes swelled up. That's when I thought to myself: Could it really be that simple?
I haven't mention the myelitis in a while. It's always with me. My grandfather used to say that he brought his friend with him: "Arthur, Arthur Itis." Athritis. I kinda feel the same way. Before I went to the doctor, balance was an issue and so was coordination. Being an athlete, I was excellent at both. I had a 30 inch vertical jump. I doubt I could have jumped four inches let alone keep my balance when I came down. I could run forever and now I couldn't run 100 feet.
The first round of steroids did nothing. It was 10 days of 4 pills at 20 mg and then 3 for 3, 2 for 3, and 1 for 3. The 10 days did wonders. Everyday was different and better. By the second day of taking 3 pills, it didn't matter any more. It was coming back. By the time I was down to 1 pill, it wasn't making any difference.
After my next visit to the neurologist, taking care of the myelitis was more important than the MS. No activity . . . worry about it later. This time 5 days of Solumedrol followed by 5 days of 4 pills, 5 days of 3, 5 of 2, and 5 of 1.
Walking around with an IV line in, washing the line with saline and heprine certainly raised some eyebrows when I was at work. Some people know of the MS, most don't. Of course questions were asked. I had an easy answer. The Solumedrol certainly helped and the rest of the pills certainly did, but it didn't and still hasn't gone away. Everyday is different.
Over Christmas, it felt like it was coming back full force. "Will I never be rid of this? Is this what life holds for me? Will I ever have my old life back?" All of a sudden it changed and was almost tolerable. Last Sunday, I almost thought I could go play volleyball. Running up the stairs though, kinda changed that. It felt like there were bands around my knees. Hard to run, plant, bend knees, push, and lift yourself up when your knees don't work.
I haven't worked out since I started shooting up. Whenever I would work out, the tingling would get worse, the vision in my right eye would get all milky, just not a good feeling. If volleyball has taught me anything is to fight through the pain. I've had a dislocated pinkie, endless sprained ankles and a partially torn MCL. What's a little tingle and numbness?
I worked out tonight for the first time in a month. Maybe the interferon is helping the myelitis or maybe it is just hopeful thinking and there's more to my MS. While always there, the tingles didn't get as pronounced and the vision thing was almost non-existent. I didn't do any cardio though and that's when things would get fun.