Ho Hum

I had my periodic check up with my neurologist today. For some reason, I was just very anxious about it. Probably because I had a relapse so soon after starting a new medication. She had a new resident with her today, so I had a little more attention than normal. Which is fine. It doesn't really bother me. My hyper-reflexes in my legs weren't so hyper this time. Some of my other reflexes were spread: Tap my bicep and my fingers twitch. I had to close my eyes and touch my nose. I got the side of it with my right hand and got the tip with my left. After the once through it came time to discuss what to do.

I have another MRI scheduled for Monday. When it comes to MS, the first assumption with any new symptom is that it's MS. My hand could be carpal tunnel, but is probably another relapse. We're going to hold off on another round of steroids for right now and see if my hand will clear up on it's own. The doctor finally came to the conclusion that the mega-doses of steroids in tablet form really don't do anything for me. If it doesn't get better in a month, we'll do another round of IV's followed by a taper.

No doctor likes to continually change medications to see what works. So Tysabri is back on the table. According the doctor, I am an excellent candidate for it. Am I an excellent candidate for PML as well? There is always that question: "What if?"

What if I don't go on Tysabri?

What if I do go on Tysabri?

These are the heavy questions that I left the office with. Needless to say, my dower mood from before hasn't really changed. It's a good thing I get my hair colored or else my grey hair would really be showing.

Happy Birthday to Me

Last Friday was my birthday. My body gave me a present of my very own. For a few days prior, my hand would tingle a little and then go away. Not that it was completely out of the norm. Then finally, it stayed and progressively got worse. Just transfer the way my legs and feet feel and transfer it to my right hand. The tips of my fingers are the worst, my knuckles are stiff and the rest of my hand just feels swollen. I have my next check up with my neurologist tuesday week.

I think this is the lowest I've felt since first getting diagnosed.

So Much For The Summer

For most of last summer, it was business as usual: I played volleyball, I ran, I enjoyed the outside. This past week, Saint Louis have been under a heat warning and will be into at least the middle of next week with temps in the mid to upper 90's and humidity pushing the heat index to over 100.

Conventional wisdom is that hot weather and MS don't mix. No kidding. I certainly found that out with spending 10 minutes outside. Left leg went all spastic and my right hand went numb. Hello air conditioning.

Nothing really new to report. I had a great bruise on my left leg about the size of my hand from the shots. If I would have thought about it, I could have taken a picture to share with the class.

Pardon the Interruption

I don't mean to interrupt this prolonged silence, but I thought I'd better write before people thought I was dead.

It's been almost three months since my last post. I haven't really been motivated to do much of anything. The little that I was working out passed by the wayside. Cardio is hard to do when you can't really do what you need to. Work has been so busy lately that by the end of the day, I can't wait to get home and chill.

The injections are going as advertised. Nice bump for about an hour followed by a nice red splotch for a few days. The places where I do have fat doesn't itch much. The injections into the muscle itch crazily. The closest I can compare it to is chicken pox. It itches, but scratch it and it itches like crazy. Injections into the muscle hurt.

Anything physical, I usually pay the price for the next day. Last weekend I probably have done the most in a long time. I helped a friend do some construction on the playground for his kids and then played some volleyball after. The next day I did some more manual labor. I had a two hour nap in the afternoon and was asleep for the night by 10:00.

The helpline from Shared Solutions calls every month. Which is fine, but utterly pointless. There's not a lot that they can say that hasn't already been said. "Do you rotate your injection sites? Are you going shallow or deep with the injections? Do you use the auto-injector or do it manually? Do you heat the area before and ice it down after? Are you missing injections?" The list could go own, but again, utterly pointless.

My lack of motivation has become a driving force and it sucks, but for right now I just don't care.

Holy crap Batman that hurt

The last two weeks have been much of the same. I can't seem to find the time to work out as much as I would like or need to. I make it in on the weekends. Monday's are out because of all those people that fail to work out over the weekend try and make up for it on Monday. Since I work in a germ factory of an office, Tuesday's are my allergy days. By the afternoon's my head is pounding, nose stuffed up, eye's watery and itchy. By the time Wednesday comes around the motivation to work out during the week evaporated. My parents were in town half of last week and half of this week.

Amazingly, there was a seamless transition on my injection meds. The people from Shared Solutions called me five days after my appointment, said they would send an informational packet and told me to call in a few days if I hadn't heard anything on a delivery. In the meantime, even though I said I didn't need a nurse to come out for the show and tell session, they were sending one anyway. I called back a few days later and they said they faxed off the prescription to my specialty pharmacy and I should call them that day. Called the pharmacy and it was ready to go and would be delivered on a Tuesday, my Rebif ran out on Wednesday and the nurse came today.

You have to hand it to the drug companies. They have more promo items to give away. I got a mesh back, a water bottle, hand sanitizer, hand cream, sun glass case, chap stick with holder, sun screen, magnetic picture frame, combination ice/hot pack and of course the obligatory pens. In this case three. Of course they all have Copaxone on them.

The nurse spent about twenty minutes here. In the end she said she felt pretty useless. Most of the people she's sees are newly diagnosed so they need the whole song and dance. After the question and answer session came the moment of truth. Since I have to shoot up every day, I can't really pick and choose where I stick myself, I started with the back of the arm. While the steroids have put 20 points on me since I took the first dose 18 months ago, like most men, it's mostly on my waist. The rest of me is rock hard muscle.

I used the auto-injector simply because it's easier. Not a lot of fat to pinch so . . . deep breath let it out, since she told me it burns just like Rebif, pull the trigger and . . . hey . . . that didn't burn. A minute or so later, it felt like somebody gave me a good pinch, a couple minutes after that it felt like somebody punched me with a knuckle sticking out. Four hours later, it's almost stopped hurting.

So . . . HOLY CRAP BATMAN, THAT HURT.

Tomorrow . . . we'll try my hip or stomach.

Updated News

Good job ManU in the 2-0 win over Inter and Ronaldo scored a goal in a big game. Shut up critics.

I had my "check up" with the neurologist today. She was pleasantly surprised that the steroids helped as much as they did. I still have some spacicity in my legs but nothing compared to two to months ago. Back then just image pulling a rubber band as tight as possible and trying to do something with it.

I've been searching for the proper phrase and I think it's irony. Her concern is that my exacerbation's are on my spinal cord rather than other places in my CNS. Is there any good spot to have an exacerbation? Anyway there were two small spots on my T6 that would explain the symptoms for this last go around. Given that fact that's where the myelitis is/was: no kidding those are consistent symptoms.

We are changing meds though: Copaxone. Thankfully, I won't have to go through the months of flu like symptoms and will have to worry site reactions and shooting up every day. We did talk about some of the new meds on the horizon. As usual with anything in the states it takes forever for the FDA to give approval so right now looks like 18 months minimum before it gets to market.

There's a couple oral drugs but nothing particular on if its in conjunction with another drug or taken singly. There's a drug that will help with walking that can be taken in conjunction with other meds. Another infusion that's taken once a year that is supposed to reduce exacerbation's by 80%. Nothing definitive on that yet.

I go back in 4 months unless something changes.

Awareness

Last week was National Awareness Week. Refer to last years post for my thoughts.

I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.

I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.

But such is the life that we lead.

On to a lighter note : Go ManU beat Inter.