medical MS Philosophy

Judging risk

Every treatment has risks associated with it. The big, bad risk for the treatment I’m on for MS is a brain infection known by the acronym of PML. It’s pretty nasty. If you’re lucky, you die from it. The ones that don’t are pretty severely brain damaged. When I had started my treatment, it looked as though the incidence of that side effect was 1 in 3000. In addition, the people that did get it tended to have a history that I didn’t have (previous use of immune sup present drugs). That’s not too bad of a risk although I would say that if given the chance to do something that had me dying in 1 out 3000, I wouldn’t do it in regular life.

The factor weighing on me from the other side is that I am in probably the worst of all demographics for MS outcomes. I am male, my symptoms showed up as motor skills first, and it also presented with lesions on the spinal cord. Looking at the data, people with those markers tend to deteriorate faster and end up less mobile than other populations. So disease management is important. Tysabri seems to be the only treatment worth a damn, despite the risk of PML, so that’s what I have been doing.

Now there is some new information out and it is making me question what to do. It turns out that all of the people that got PML also tested positive for JC virus antibodies. The JC virus is  relatively benign virus, unless you are doing something that compromises your brain’s immunity, then you can get PML. Last I read, about 60% of the population has been exposed to the JC virus. The new numbers suggest that if you have the JC virus antibodies, your risk of getting PML while on tysabri is 1 in 500.

That’s a lot worse than 1 in 3000. The risk of infection is still unlikely, but not as unlikely as I would like. The good news is that if I don’t have the antibodies, it doesn’t look as though I’ll be a candidate for PML at all, or at least until I’m exposed to to the virus… I got my blood drawn yesterday to test for the presence of the antibodies. I’m really hoping that they come back negative. If it does, I’ll continue doing my treatment. If it comes back positive, I’m not sure what I’ll do. Without treatment, there is a much better than 1 in 500 chance that I will be put in a very bad way from MS. On the other hand, it won’t kill me or damage my brain either. There really aren’t any other decent proven treatments out there.

So that’s the potential decision I’ll have to face, a more certain bad thing vs. a less certain very bad thing. Let’s just hope for a negative test result, that would make so much easier…

medical MS

The power of suggestion

I was poring over some information on a new drug I was going to start when I ran across a fascinating table. It was listing the incidence of side effects with the drug as opposed to the group on the placebo. It was no surprise to find the drug had some side effects,what did surprise me was how there were side effects ascribed to the placebo as well. All of the instances of dizziness, upset stomachs, dry mouth, etc. in the placebo group had to have been caused by something else and yet I’m sure that those people blamed the pill they were taking because they were being asked about it. When they fill in the questionnaire about effects of the pill, any old thing that happened would be the pill’s fault.

Man, if I were in a study like that, I’d go crazy. I’m sure I would constantly try to outguess the study, to try to figure out if I got the placebo or not. Hell, I do that every day with MS. Any little twinge I feel I start to wonder if it is the MS or something else. It’s one of the more maddening aspects of this disease, it could manifest itself in almost any way.

My doctor threw in another wild card for me yesterday. I had just started to take some samples of the pill I mentioned earlier and I was talking to him about how it affected me. One thing that I noticed was how hungry I felt when I took the pill. That confused me because I thought that stimulants were supposed to suppress appetites. I haven’t really felt hungry for a long time now. I do feel the effects of being hungry, but I don’t really feel hungry if you know what I mean. One other thing that I mentioned was several times during the past week I suddenly felt as though I was on the verge of tears without knowing why. I wasn’t sad, or morose or anything, and the feeling passed fairly quickly. Still, it was unnerving. I figured it was a side effect of the pill. The doc pointed out that if I had felt that on a day I hadn’t taken the pill it wasn’t the pill. Hmmm..

He mentioned some syndrome about as long as my arm that described patients with lesions in the frontal lobe experiencing the physical aspects of emotions without feeling the emotion itself. Ugh. He checked my latest MRI and said he didn’t see any evidence of that. Whew!

Then he asked, “Do you think you’re depressed?” Well no, not really. He said that some of the symptoms fit, tiredness, cloudy thinking, lack of appetite, desire to sleep all the time… On top of that he also told me that some tremendous number of MS patients are also clinically depressed. Sometimes that’s from coping with a chronic condition, but other times it can actually stem from physical changes in the brain.

Great. I really don’t feel depressed, or morose, cynical, or anything like that. Yes, I do get blue and upset over my condition but I’m mostly optimistic in my life. Still, there are a lot of other symptoms that I have… Grrr…. Now I’m wondering if what ails me on any given day is MS, or depression, or maybe MS related depression, or MS caused depression…. Oh and guess what, there are pills for that too! I’m so sick of being offered pills, I’m so sick of worrying about juggling side effects. I am really leery about mood altering drugs. Anytime prescriptions for a certain type of drug skyrockets over a short period of time I am very suspicious. Anti-depressants certainly fall into that category.

My doctor did speculate that one of the reasons I might have felt hungry when I took the stimulant was that it lifted my mood. If my appetite had been surprised via depression, that would make some sense. Of course that also feeds into the suggestion that I actually am depressed but don’t realize it. For now, I am going to try this new pill and see how that works. I am going to continue to put off anti-depressants until there aren’t any other options, or until I convince myself that I really am depressed. Ugh.


Not a great morning

I went to the gym yesterday. It has been time for me to get back to it, I’ve been really weak and have had zero energy for too long. WIth my vast experience of going back to the gym, I knew well enough not to overdo it. I did a rather leisure 20 minutes on the bike, and then did some core exercises. I did just enough for the muscles to know that I’m getting back to them, nothing more.

I slept really well, another benefit I had been hoping for. I noticed that my legs, back and abs were a bit stiff. I hadn’t done enough to make them sore, but it was clear that they hadn’t been used in a long while. Then I got my normal bought of spasticity. It’s totally normal for my legs to lock up when I wake up. They turn rigid and I can’t do anything with them for a couple of minutes. On my less good days, they cramp up too. This morning had a little more kick to it than I had expected, and I literally mean kick. Instead of simply locking up, my left leg went into a pumping motion, kinda like your dog when you scratch in just the right area… That’s happened before, but it hadn’t done that in a while. The thing that got to me was that my stiff core muscles decided to lock up on me too.

So there I was, with my right leg stiff, my left leg pumping, and my abs and back stiff as a board. I couldn’t move and I’ll admit to freaking out a bit. My legs calmed down like they always do, but my abs and back were a bit more tenacious. They would relax, and then I’d try to get up and they’d stiffen up on me again. This went on for some time, probably less than I imagine, but it seemed like a long time. I lay as quiet as I could, and I ended up dropping off to sleep again. I woke up a while later and repeated the process. By the time I could get out of bed, it was almost noon (right when I was supposed to be at work). I called into work and tried to limber up.

I probably could have gone to work, but I was a bit freaked out. I wonder how many more lovely little surprises I’m going to get as the years go on. I also wonder what it’s going to be like once I start doing some upper body exercise. With any luck this won’t happen once I’m in better shape and if it does, I’ll be a little more sanguine about it.

freedom MS


It was suggested to me to go on disability when I was diagnosed. I bristled at the idea, I felt like I was still a useful person and could work, if I could find a job. Eventually, I did get a job and I’ve been working ever since. I think the main idea for me going on disability at the time was that I could go on medicare. Looking back, I probably couldn’t have gotten disability benefits at all, or if I did, it would have taken quite a while for them to kick in.

I think a lot of my reaction came from growing up with lots of stories of fraudsters trying to get out of work. My mother faced a seemingly never-ending stream of people faking injuries and incapacitation.  I was doing some research into disability insurance when all of those stories came flooding back to me. One of the advice forums about disability insurance was filled with dodgy claims. The most egregious was a guy claiming PTSD from being fired from his last job. Really?

I know I shouldn’t let it get to me, but I really don’t want to be lumped in with people like that. I’ll admit to having days where I don’t think I’ll be able to keep working and I understand the temptation to give up and claim disability. Two things have kept me from going there. First of all, there would be a substantial pay cut. I have insurance, but it would still be a 30% cut in pay. The way disability insurance works, they will pay you a certain percentage of your salary and when you go on social security disability, they will pay the difference between what SS pays and the percentage of your pay. The main reason I dont want to go on disability ‘s that I just don’t believe that everyone else should pay because I have a hard time at work. So far, my awful days come and then they go. I can work, and I’m pretty damn good at what I do. If I get to the point where I just can’t work at all, I’ll have to go on disability. Let’s hope that day never comes….


PTSD from getting fired? I’m still pissed about that…


How feeling good can make me depressed

My doctor and I have been trying to figure out why I’m so tired. With the tiredness comes brain fogs, memory laser, etc. He suggested that perhaps I’m not sleeping well and that’s leading to the fatigue. I’ve done some things to try to sleep better, different position, different medicines, etc. I think I am sleeping better, but I still get really tired.

Another easy reason why I could be tired and not sleeping as well as I could be is that I’m out of shape. There’s no question that I am. It’s a terrible cycle. I have no energy, so I don’t exercise. Since I don’t exercise, I have no energy. Lather, rinse, repeat… I have been getting myself geared up to start going to the gym, knowing that getting in shape will fight back the fatigue. If I added some more muscle mass, got some cardio in, I’d sleep better, I’d have more energy, etc. Yup, that’s the ticket, if I’d just get off my butt and exercise, I’d be better in no time.

THose are good, hopeful thoughts. The promise of better times is a good motivator even if I really hate going to the gym. Well, I woke up on thursday and felt good. Dare I say it, I even felt… normal. I woke up refreshed, with energy, my legs didn’t give me any trouble, my balance was fine, clear head, the whole 9 yards. I didn’t even take breaks at work, I just didn’t think of it. That lasted for two days and it was great. But then I woke up on the third day and I was back to my regular exhaustion.

The thought occurred to me that I hadn’t gotten into any better shape over the last three days. My improvement was simply a whim of the disease. It decided that I was going to feel good on those days, and then it decided that I wasn’t. It’s sobering to think that you have no control over how you feel day to day. It eventually sunk in that even if I were to get into better shape, there’s no guaranty  that I’d actually feel better. If I did feel better, my overall feeling will still be at the whim of the disease. SIGH.

I’m going to start going to the gym soon. I need to try to stave off other health issues, but man, it’s going to be tough to get too excited to go.

MS odds and ends

Events are conspiring against me

It’s amazing how the little things in life can be blown up with MS… I needed to get the muffler fixed on the car, but they had to order the part. When could I leave it to be fixed? Well, they were going to get the part in on wednesday and I didn’t have to be at work on thursday until 1:30. Plus, the parking lot in front of my house was going to get repaved starting really early on thursday morning. This gave me a place to put the car. So I’ll just drop the car off after work and then pick it up before I go on thursday. Plus, the shop is just a bit further than my Pakistani resturants, i.e. about 4 blocks away. I figured I’d drop off the car and then walk back home.

That’s when things started to go downhill. Wednesday was also the day the heat wave kicked in. Walking the 4 blocks in the heat after a day’s work was exhausting. I managed to get the garage to pick me up the next day although I still ended up hanging out in the heat for a while before they did. Was really beat at work, but I did get through the day. I got out of work around 10. Forgot that the paving was still going on, so I had to find a parking space when I got back home. Ended up parking 5 blocks away. The walk home in the heat after the day’s work just about killed me this time.

My alarm went off at 7:30 this morning. I must have fallen asleep as soon as I turned it off, I certainly don’t remember doing it. Woke up briefly around 9:30, dragged my carcass out of bed to text work and then promptly fell asleep again. Woke up after 12, still groggy and stiff. I need to go retrieve the car after 6, the paving is supposed to be done by then. I fully anticipate being hobbled by the walk, but without the standing up for 7 hours, it’ll be doable.

Still, another day off of work, this is getting expensive. Here’s to hoping that stupid little things stop ganging up on me!

medical MS

Saw my Neuro today

He looked at my latest MRIs and found that nothing has changed in my head, no new lesions! Whew! It seems as though my Tysabri is doing its job in keeping the disease at bay. The challenge now is to figure out why I don’t feel as good as I did last year. I feel more tired, weaker, a little more muddle headed, and my very short term memory seems to be shot to hell. It isn’t uncommon for me to have my hand near the shampoo and wonder if I’ve already washed my hair. Or I think of something I want to look up online when I’m done doing the thing I’m doing at present. Even if, and maybe especially if, it is 30 seconds later, it is frequently gone.

My doctor thinks I might have some sort of underlying sleep issue like apnea. Could be I suppose. We’re also experimenting with some of my other medicines to see if they are the cause of any of these issues. He mentioned the possibility of Ritilin to help combat the fatigue. It seems that it is fairly common for folks with MS to take it.

There is also the distinct possibility that I am just really put of shape. That wouldn’t explain the memory thing, but it could certainly help explain a lot of the other things. Trouble is that I am frequently wiped out, especially after work. Exercising wipes me out, even going into the next day. I don’t feel as though I can work when I’m that wiped out. It’s a big reason why I’m in the shape I’m in. I wonder if I’m going to have to take some time off of work just to get going on that. I’ll talk to my doctor about that and look into gym memberships again. Groan, taking a pill is so much easier than going to the gym…

So I’m glad that the big stuff seems to be behaving itself, now to work on the smaller stuff…

medical MS

Sometimes the cure is worse than the disease

I got a cold last month and it brought me down. Often times, a cold for me is a time for my MS to get noticeably worse, this last time was one of those times. The trouble was that some of the MS symptoms stuck around for a while after the cold was gone. Fatigue, cloudy head, dizziness, etc. At a couple of weeks into it, I gave up and called my neuro, didn’t think I could keep up my normal schedule the way I was going.

Wouldn’t you know it, that phone call seemed to banish the worst of the symptoms. By the time I got to the doctor’s, I was feeling mostly OK. Still really tired, but much better than I had been. We chatted, I got some anti-spacticity drugs, an appointment for an MRI (which is today), and a follow up appointment.

The anti-spacticity medicine has mostly helped me sleep better, which has helped with the fatigue. I usually had no trouble falling asleep, the trouble was getting deep sleep. My legs and hips would routinely stiffen up, waking me up. Cramps were fairly common too. The sudden adrenaline rush of severe pain made it difficult to go back to sleep afterwards. That seems to be mostly taken care of now.

That particular drug is one that I needed to gradually up the dosage on. When I got to my final dosage several days ago, my condition deteriorated badly. I was so dizzy I was having trouble sitting sometimes. I was also having some significant cognitive issues. That’s fine on my day off, but I had to call in to work the next day. I had an inkling that the drug I had been taking since January could be the culprit. I didn’t take it the next day and felt better, but I was still bad enough/freaked out that I didn’t go to work. I didn’t take it the next day and felt fine.

Well, when I say fine, I mean not dizzy and I could think. Of course since I wasn’t taking the drug to help my legs, I felt pretty weak. I could think and my world wasn’t spinning, so on balance (har har) I think that was an improvement. Essentially, I was back to where I was in January.

So why the sudden issues? I dunno, maybe it was some sort of interaction with the two drugs? The good news is that since I’m taking these drugs to make me feel better, I can stop taking them if they don’t do that. It’s aggravating, I had to use up several days of vacation and I’m not sure how I’ll pay for the actual vacation I’ve already scheduled. I guess the good news is that I’m back to work. We’ll see if there is any news with the MRI. I’m hoping this next week will be uneventful… Oh for a boring life:)


Taking the bad with the good

I’ve now done a month on Ampyra, my newest medicine. It is supposed to make me stronger and allow me to walk better. I wasn’t so sure at first. I got pretty dizzy when it kicked in, and it took me a while to remember to take the damn things. But then towards the end of the month, an interesting thing happened, it started to work the way it was supposed to! My legs feel noticeably stronger now. I can last most of the day at work without feeling like I’m going to fall over. It isn’t until the end of the day that I start feeling fatigue. I’ve had several days where I almost (almost mind you) feel normal! I felt good enough that I actually shoveled out my own parking space after our last snowfall. Granted, i thought I had killed myself afterwards, but with  little rest I was able to go to work and not have any real problems. Now that’s what I call progress!

But it’s never all that simple of course. The day before yesterday I got my Tysabri infusion and felt a little fatigued. Didn’t think much about it. I got up the next day a little tired but feeling good. Took my Ampyra and went to work. I felt pretty normal until the Ampyra kicked in. Wooosh. Suddenly, everything was unfocused. Not out of focus, but like everything in my field of vision was as significant as the stuff in the corner of my eye. I couldn’t focus or concentrate. I felt like I was dreaming of being at work. I lasted an hour, maybe an hour and a half, then went home. Everything was fine later in the day but there was no way of telling when that was going to be at work.

I had a similar feeling the last time I took this the day after my infusion, but chalked it up to the cold that I came down with and proceeded to kick my tail. If two incidents aren’t a pattern, it’s still enough to take precautions over. From now on, I’m going to have the day after my infusion off too…

So that was a bit of a bummer, but know what? I’ll take that trade off in exchange for the positive effects I get through the rest of the month. Besides, who knows? Maybe this is just one more thing that my body has to get used to. It got used to the usual dosing over the first month, maybe it takes a little while for it to get used to the combination too. So a minor hiccup, but progress is being made! Not that I really want to continue shoveling snow…


Highs and Lows

Well, the excitement of my new medicine has quickly been quashed by me being laid up for 3 days in a row. I had been bragging to my nurse during my infusion that I rarely get ill. well, wouldn’t you know it, I got a cold the next day. A cold, big deal, right?


Here’s the thing. My immune system hates my nervous system. When I get sick or get an infection, etc. my immune system can go on the attack and cause an MS flare-up. I get the brain fog and have difficulty walking, along with my old friend exhaustion. This has happened to me once before and it totally freaked me out. I’m a little calmer this time, I’m expecting the MS to die down along with the cold, like last time. It seems to be happening, I’m feeling better all around today and hoping to go back to work tomorrow.


So I shouldn’t brag… I’m also going to keep in mind that things can change quickly, feeling good one moment, feeling bad the next is always a possibility. This should help me appreciate the times I feel good, right?