Thursday, June 26, 2008

Long time no post

Long gaps between posts are a good thing. Lately I've been reading the book, "Curing MS" by Dr. Weiner. It's hard to read sometimes as the discussions are frank and the history of treatments for MS was essentially non-existant until the last 15 years.

Even now there is a lot we don't know about how the treatments work. The drug that I'm on is an Interferon and they are used for treating viruses -- based on the hypothesis that MS was caused by a virus. I think it's clear now that it isn't, but the drugs are clinically proven to help. It looks like what happens is that it modifies the immune system, lowering production of bad T cells and increasing production of good T cells.

For my own bookkeeping I'll discuss each symptom and how it has been behaving lately:
  • Parasthesia -- seems to be creeping up slowly, similar to last year when it started in Jan. and progressed until my diagnosis and steroid treatment in Aug. Feet still hurt with the burning sensation and parasthesia is mainly on my back and slightly returned to legs. Last week out of the blue my hands got a tingly feeling, like the feeling just before the funny bone feeling goes away... it is still there.
  • Spasticity -- seems to be under control with stretching and baclofen.
  • Fatigue -- not hitting me at the moment.
  • Balance -- still seems to be normal, had another fairly decent soccer game tonite and haven't noticed any degradation in my play.
  • Coordination -- seems normal
  • Bladder -- same problems, I'm nervous to go back the the urologist.

Overall, I still feel decent, but I'm worried about parasthesia and that it is creeping back in like during my first clinical relapse.

I'm motivated about learning the history of MS based on reading this book. I'm a little nervous about how my symptoms began, in so many cases the first MS relapse comes on all of a suddent, and dramatically. Loss of vision, numbness all over. I've seen some indication in the book that it's not a good thing to have the steady progression that I feel. But, I'm hypersensitive about the parasthesia, and it always flares up after a game. So, no use worrying about my prognosis.

Sunday, May 11, 2008

The bad needle is going back to QA

I spoke with a QA manager at Serono and they asked if I saved my needle that fractured. I did, so I'm sending it back in along with my Rebiject device so they can take it apart and look at it. I've used it twice since the needle broke last week, but sending it in sounds like a good idea.

Battling a sore throat the past week that won't go away, I am hoping it's allergies but I guess I will go see my primary Mon. in case it's Strep or something.

My throat get's worse as the day goes on, and it's the kind of sore throat that feels really swollen when you swallow or yawn - and of course, all I want to do is yawn tonite...

Wednesday, May 7, 2008

Fun with needles

Actually it wasn't fun, at all.

Although I suppose that after about 100 injections there are bound to be a few that don't go as planned. In this case the integrity of the syringe gave way in the middle of my injector. The result was a big prick on my right upper arm that just caused some bleeding, and absolutely no medicine to be injected.

I kept the needle and will contact my Rebif nurse in the morning, the top part of the needle, where the plunger enters the syringe cracked, causing some sort of jam-up in the auto-injector. I took it apart and there didn't seem to be anything left inside, so I warmed up another needle (takes about an hour) and injected my other arm. I figured my right arm had suffered enough for the day.

Hopefully I've done the right thing. I took a close look at the first needle, and there was definitely no movement of the plunger. In fact the liquid in the syringe looked identical to a syringe after the auto-injector fired on needles that I had forgotten to uncap -- the liquid gets frothy/bubbly.

Quite enough fun for one night, all I'm asking for is relatively painless injections with no drama, i s that too much!

Thursday, May 1, 2008

Back to normal

Which these days means I'm injecting myself three times a week. Fun.

So, no negative effects from the lapse in Rebif while I was on antibiotics, at least that I can feel at this point. I've got a soccer game tonite so that should be a good test of my balance/coordination side, which is the main factor in determining relapses.

Since the last few weeks were full of events related to MS I ended up doing a bit more research, and, as with anything on the internet, ran into a few, possibly disheartening, facts. MS that presents coordination problems has a less optimistic prognosis. And, the further between relapses the better the prognosis. Well, who knows if my initial encounters with parasthesia count, but if so my relapses were at least 2 years apart, possibly less. And I certainly had balance/coordination problems, you just have to read my early blogs about last summer to see what it was like. Whatever, going to push forward!

I started back on injections with two shots to the stomach just to make sure I still had the courage - they are sometimes the most painful. They weren't so bad, I was expecting worse.

Monday, April 21, 2008

After a week without Rebif

Nothing major to report, spent the weekend with the neighbors and their kids. All the kids must be wiped today after spending the entire days Sat. and Sun. (and Fri. evening) playing together.

I don't feel any better or any wors physically after not taking my Rebif for a week. I guess that's a good thing, but I still do miss the routine and hope it doesn't take long to get back into it. After doing yardwork all weekend I was reminded of my inability to do any yardwork last year. If the price to pay for that is thrice-weekly injections... then that's a small price.

Should be coming off the antibiotics towards the end of the week, thenback to injections. The thought process is, that if my fevers start back up again, there may be a problem with the interferon. Otherwise, I just had fevers last week due to a sinus infection. I hope it is the former.

Tuesday, April 15, 2008

Antibiotics and NO Rebif

I had had a fever since Sat. night and had thought it was due to a reaction to the Rebif. Normally I get a fever if I do not premed with Advil... on my last shot, I did premed late, around 11:30pm, two hours after the shot and as soon as I felt like I was coming down with a fever, I took a couple Advil.

Unfortunately I couldn't get the fever to go away that night, nor the rest of the entire day on Saturday. My fever hit 102.6 on our (high degree of uncertainty) thermometer, and was up and down a bit from there. I struggled through the next night fitfully again, but woke up feeling decent. I noticed some feverish symptoms during the MS Walk on Sunday, but, during the day at least, it was not enough to bother me.

I was worried that the fevers were a reaction to the Rebif, I didn't want to develop a more severe reaction to it; after seven months the whole injection routine is disturbingly comforting. At least it's something I control and I know that I am helping at least slightly. But I still couldn't get the fevers to retreat. Kris called the neuro office and my primary's office and they suggested trying advil/tylenol together. This didn't really work, but late Sunday night I dosed off with my fever slowly going down.

Monday I felt decent in the morning again, but noticed a really sore throat that evening. Previously I had felt no other symptoms that might explain the fever. I made it through the day, even working as normal, but that night, around dinner - the fevers came back, up to about 101.7 again. I decided I had to call in the morning.

Saw my Dr. at 2:30 after feeling lethargic and suddenly completely congested in the nose and sinuses. He said my throat looked red, asked what color my boogies were (bright green) and put me on Amoxycillin. For 10 days.

So, I called my neurologist, who had advised me the day before to skip my Monday night injection, and let her know the results of my Dr. visit. I think she had a laugh that my primary just threw me onto Amoxy without any tests. The important result of that conversation though, is that I'll be off the Rebif completely for ten days while taking the penicillin.

I'm fairly concerned about this, but given the fevers I've had I just want to get better. Part of the reason I am off the Rebif, I think, is to determine if there is indeed an allergic reaction that developed later than usual. After the ten days, if my fever has gone away, when I go back on the Rebif, if fevers come back, then it is likely an allergic reaction.

Well, that's enough info for me to remember all the details, so, wish me luck!

Tuesday, April 8, 2008

MS Walk Boston : 2008

This weekend I will be doing the MS Walk with my family in Boston. The event starts out at the Harvard Athletic Center and there are 3 and 5 mile courses. I've joined a team from EMD Serono (they make Rebif) and hopefully there will be fellow MS sufferers who are also taking Rebif on the team, it would be great to share my experiences and hear their's.

We are taking the little munchkin as well, bringing the big jogging stroller in case he get's tired or, more likely, wanderlust.... It should be fun, I'll post a picture next week!

If you would like to contribute in my name, here is a direct link to my page on the National MS Society's web site:

Wednesday, March 12, 2008

Snowboarding at Mt. Snow

Got out on the slopes again for some late winter/spring skiing and so far the conditions have been absolutely perfect. Here's a shot of Kris on the slope with a nice blue sky in the background.
I was able to hit some bigger jumps this week and I went to the (extensive) trouble of making this video!

Monday, March 10, 2008

Snowboarding again tomorrow

Will be trying to get out again the next two days for more snowboarding. This is a great trip since the condo was free, and there are 9 of us here for the week to ski/board.

From an MS perspective, things continue to go well, the same problems exist that I do not think will go away -- numbness/burning in my toes and occasional bouts of parasthesia in my lower back/back of arms. It's not to the degree that it was BS (Before Solu-medrol) and I only notice it when I think about it.

I am battling spasticity in my legs and back/neck nowadays, but exercise resolves it and stretching pushes it back a bit. At my recent visit to the MS clinic at the hospital the PT advised me to stretch with a routine -- I haven't started yet, I do it when I have time. Her thought and experience indicated that regular stretching routines at the same time each day are far more effective for most people. I'll do my best to follow her suggestions.

Wednesday, February 13, 2008

Snowboarding in Vail Day 4

Big Air Day!

Woot, got some air today! This was a fun day, we took it a bit slow as it was our fourth day in a row and Scott was on a board for the first time. But, Dave and I practiced our aerial technique as shown in this picture.

That's about four feet of vertical and I'm grabbing the toe side edge of the board in a maneuver I'm calling, uhm, Frontside Air Supreme.

Dave was getting the hang of it too as you can see in his, uhm, Wicked Ollie.

Tuesday, February 12, 2008

Snowboarding in Vail

There was a time last summer when I really didn't think that I would be skiing or snowboarding anymore. I couldn't run around a soccer field without toppling over. But this week, I'm boarding on the slopes at Vail.
I had been boarding two (and a half) other times and decided to try it out for the week that I'm out here at Vail. So, I've got my rental board and have been out for three days in a row so far! I'm really excited about how I feel so far, my legs have been burning, cramping and just plain tired, but in a good way! I didn't even feel overly stiff today after my injection last night.

I'm linking my turns together, making progress on becoming an intermediate snowboarder. I have a couple video links from Day 1, and hopefully I'll make some more later this week.

Here are a couple pics of me and my buddies, the first day was nice and sunny, since then it's been snowing all day every day.