Another month

It's official, I'll be doing at least another month of physical therapy. I finally feel some muscles where I didn't have any before, but my stamina just isn't there. Certainly not enough for a whole day's worth. It could be worse really. I am seeing some improvement, now we just need to speed that up.

6 weeks with no work

No, I'm not on vacation… I've gone onto short term disability to do another round of physical therapy. I need to build up my strength again. I tried working and doing physical therapy at the same time last time. Didn't work out so well. The PT wore me out so it was difficult to work. But because I was so tired on the days I didn't go to PT, I didn't do a lot of the exercises I was supposed to at home. I still think I got some benefits out of it but it wasn't as much as I had hoped.

Had my first session yesterday and my gut feeling was confirmed, I need to work on my lower body. Did just a few things and I was wiped out. Was wiped out today too. Honestly, not being expected at work is a great relief to me. I had been steeling my resolve every morning for so long and I got ground down. It's tough to mentally pump yourself up every day. Having this time away from work will allow me to get stronger and hopefully recharge me mentally.

I'm also going to use the time to get some other appointments out of the way too. I need new glasses, I need a physical, I need a haircut, etc. I have been so tired that I have mostly just hung around the house on my days off. Now I can try to catch up! 

I'm also going to try writing some more on this blog, I've gotten out of the habit and I miss it...

Diet update

I've been pretty good about my diet. I'm allowing myself one day a week to eat bread or rice, the rest of the time it's veggies and meat. I've felt pretty good, very little of the usual muddy headedness and balance problems. It's also striking what happens when I deviate from it. My father and stepmother moved me into my new/old place (more about that in another post) and then took me out to dinner. We went to a really nice Indian place around the corner. You can't very well eat Indian without bread and rice, so I ate bread and rice. Ice cream was offered later and I couldn't say no. The next night, my mother made a family favorite, Hungarian goulash. I have no idea if it's actually Hungarian or not, but it sure is tasty. It's served over a bed of noodles. Well, it's an unusual treat, and mom made it, so of course I was going to chow down. I felt lousy for the next two days. Dizzy, fatigued, and muddleheaded. Started eating my usual meat veggie diet and it cleared up within a day. Maybe it's a coincidence, but it does fit in with the longer pattern I've noticed.

As far as the diet part is concerned, I weighed myself yesterday and I came in at 204. That compares with 219 three months ago. Yes, I used two different scales, but that's a big enough difference that I know there's been a real loss.  It's good to drop the weight, my jeans certainly fit better. I've also started to check my blood pressure in the morning. I'm averaging around 120/67ish. The months previous to me starting my diet I was hitting 130 and 140 at my monthly infusions. Yes, it's only been a handful of days, and my previous measurements were only done once a month where any old thing could throw them off. Still, I like the difference:) It's possible losing the weight could be enough to lower the BP, I don't really care. I'm going to continue weighing myself and taking my blood pressure, who knows, maybe I'll start exercising or something too. The diet is pretty easy to stick to, especially since I have a cheat day built in. After I've been on it for several more months, I'll go get my blood drawn and see what it looks like.

The diet

I've been on the diet almost two weeks now. Gotta say, I'm impressed. I think I've lost 6 or 7 pounds, it's hard to tell since I don't have a scale but my pants are now noticeably loose. My jeans had been uncomfortably tight, now I'm cinching the belt a bit more. Plus, I actually have to tie my pajama bottoms now. Plus, I still haven't had any dizzy/lightheaded spells since I started the diet. All I've done is cut out most of my carbs. All I'm eating is meat and vegetables. Gary Taubes ideas made a lot of sense to me and so far I'd say he was on the right track.

He actually advocates a high fat diet, and I've been following that. One aspect of his theory certainly seems true, the number of calories really doesn't matter. I have been eating eggs and sausage for breakfast and learning to love bratwursts, kielbasas, and other sausages. I've had more than a few burgers in the last couple of weeks. In short, I'm sure that my calorie consumption is far higher than it had been before, but my weight has come down. Eating at work has proven to be a little more challenging, I can only eat but so many salads. There is a mall Thai place, I can eat there (with no rice) since they don't bread their meat and they have lots of veggies. I'm going to have to find some variety there so I don't go crazy.

As much as I love my white rice, bread, crackers, not to mention sweets, it hasn't been all that hard to do this. Partly I think it's because what I do eat is so filling I don't have the cravings to munch nearly as much as before. I've also found some things that allow me to snack, like Trader Joes power berry trek mix (almonds, cashews, dried cranberries, and yes, some chocolate) and their Soy and flaxseed chips. I do have to watch them, but they have a lot of fiber so they aren't as carb heavy as regular chips are.

I'm also eating more veggies. Trying to eat more salads, green beans, and mixed vegetables. Yeah, they have carbs, but not a whole lot. Think I'll be OK with a few creeping in here and there:)

Weight is only one part of course, I'm going to try to keep tabs on my blood pressure, cholesterol, etc. Taubes is adamant that there is very little science to back up the conventional wisdom that fats clog up your arteries. Still, when you go against the grain, you need to make sure that there's a reason the conventional wisdom is what it is.

Anyway, I plan on keeping on as long as I keep losing weight and feel good. I'll keep you updated!

wow

Had my first physical therapy session yesterday. It was mostly an initial screening, seeing where I was and what I wanted to do etc. The physical therapist was happy with my general strength and flexibility. I kept trying to tell her that most of my problems don't show up until I've been on my feet for a while, but she reassured me that most of her patients come in much worse. I had gone in worried about my strength and balance, in that order. My function strength seemed OK, but my balance was actually worse than I thought.

I did a simple test, stand on one foot for 30 seconds. It was tough on my right foot, and my left was noticeably worse. Doing with my eyes closed was hopeless, I was going over in under 5 seconds. She assigned a list of 5 exercises to do. We would concentrate on balance first and then work our way into the strength part. She thought I'd be able to do the first three with little problem, but that the last two would be challenging. I went home and then started my exercises a few hours later. Wow. Standing on one foot was still challenging to me, but rowing 2 sets of 30 seconds on each foot was really difficult, it really took it out of me. And that was the first exercise! The second one involved standing on one foot while moving the other leg. I couldn't even do two sets of that.

I called it quits for the night. I figured that between the exercises at the office and the food shopping I had done, my legs were too tired. This morning was a classic example of struggling to wake from a coma. I was in bed for what seemed like forever, still dreaming but knowing that I had to get up. It took an unbelievable amount of willpower to actually get up. There was no way I was going to get to work on time, so I called them up, ate, and then did my exercises. I think my initial suspicion was true about being tired the day before because this time I was able to do both sets of both exercises. It was still difficult, but I could do them. I was tired though. Had to rest afterwards. I tried going to work, but that didn't work out so well. I knew I was in trouble when the walk from the car to the store totally wiped me out. My legs were rubber, and my glutes, calves, and hamstrings were all aching. I turned right around and went back home. As bad as I felt, standing on my legs for another 7 hours was not going to do me any favors.

So I'm guessing my currently prescribes exercises are both strength and balance ones. I have so little strength in my legs that even standing on one foot for 30 seconds at a time is a good workout. No wonder I felt so awful when I did 20 minutes on the exercise bike! I have my first real session tomorrow, I'm sure I'll be really tired at the end of it. I've already warned work that if I feel like I do today on thursday, I won't come in. Still, this is a different type of exhaustion, this is a physical exertion one, so I'm hopeful that even a few sessions like this and I'll be noticeably better. Wish me luck!

Nutrition

Nothing will make you focus on your health like feeling lousy. November was a pretty bad month for me, missed a bunch of time at work. I'm feeling better now and I think, maybe, that a change in diet might have helped.

Here's the thing about nutrition, nobody has any idea what's going on. You can read all you want, you'll only find two constants. Sweets, candy, pastries, etc. are bad. If you eat them at all, you should only do it once in a while. The other thing that is constant is that vegetables are good, you should eat them. Everything else is up in the air, even with vegetables. How much should you eat? Should you eat anything else? Should they be cooked? Any given recommended diet can be argued against. An all meat diet is better than vegetarian, meat is a kind of poison, low fat is the way to go, no high fat is, avoid eggs, eggs are good for you, low salt diets are good for people with high blood pressure, low salt diets might kill you, it goes on and on.

Russ Roberts made the connection between nutrition and macroeconomics in this episode of econtalk, a podcast about economics. There are a lot of ideas out there in the nutrition world, many of them are contradictory. When there is any science involved at all, it isn't overly convincing and doesn't do much to counteract anyone's previous beliefs. In both fields, there is a lot of wisdom being given by experts, but there isn't a whole lot of results to go with their ideas.

Gary Taubes has done a lot of research on nutrition and diet and has found that there is precious little evidence for the conventional wisdom of a low fat diet being good for losing weight and being heart healthy. What he did find seemed to point towards the opposite. He espouses a low carb diet and promotes the idea that sugars are the real killer. In the podcast, he and Russ talk about the Atkins diet and how well it works. It really does allow you to drop pounds quickly, it is repeatable and is documented in many places. The only catch is that it isn't clear if you're killing yourself doing it. That is, we have conventional wisdom telling us that eating all that fat will clog up your arteries, but there isn't much evidence either way. He has spent a lot of time finding out how that theory has gotten popular, turns out actual science wasn't as involved as good old fashioned advocacy was.

I had been feeling really lightheaded, dizzy, and out of it for a while when I heard this podcast. I started to think about what I usually ate and things like white bread (bagels, French bread, white bread on my sandwiches), rice, and potatoes. All of these things were on Taubes' list of do not eat list. The carbohydrates cause an insulin spike and then cause general mayhem in the body according to his theory. I figured, what the heck, and tried to follow his advice.

Well, no more dizziness, my head was clear, and I wasn't so effing tired all the time. What bread I ate was multigrain, pretty hardy stuff. I ate veggies, meats, and a little bit of brown rice. It wasn't a subtle difference. Of course, it was hardly a rigorous trial either. Think I'll do two weeks on his diet and then go back to my regular fare and see if I notice a difference. His ideas make sense to me, but there are other sensible diets out there too. Because it is impossible to sort out the signal from the noise in the nutrition world, I am going to go with what makes me feel healthier and follow that up with checkups. What else can you do?

I remember writing in grad school about how certain macroeconomic theories seem to work for a while and then they fall apart. It seems completely reasonable to me that economies can change and need different solutions at different times. I am open to the possibility that different people have different genes, different hormone levels, and different metabolisms and so need different diets. Is it possible that lots of those diets are good ones, for the right people? I dunno, but if I can keep feeling like this last week, I'll be happy changing my diet a bit.

Saw the doc

When I went to the doc last, I wasn't really having one of my good days, and it sounds like that clouded my perception of what happened and the advice I was given. They still haven't gotten back the results of the JC virus antibodies test, but regardless of what it comes back as, I will continue to take tysabri. My doc explained that he doesn't consider me to be a high risk patient for PML since I have never had any other MS drugs or anything else that could mess up my immune system. He also came as close as I think he could to saying that it would be a really bad idea to stop this particular treatment because of the outlook otherwise.

That's a relief really. This drug has a really good record of reducing new lesions and slowing the progression of the disease. As a bonus, the side effect I have been getting from it has been me feeling better for the couple weeks after. There are now other, oral, treatments on the market now that seem to have the same effectiveness against MS, but also have more common nasty side effects like heart problems, etc. There are also some drugs that need to be injected either every other day or once a week that don't work as well, and they have the predictable side effect of making you feel like you have the flu...

So, like I said, I'm glad I'll be staying on this. They'll keep monitoring me for signs of PML, but it's still a rather rare thing. 200 people out of 50,000 have gotten it, and a significant number of them had immune suppressing treatments too. I like my chances...

I'm also going to start going to physical therapy. Not really sure what's involved with that, but I think it's a good idea. My muscle mass has gone down considerably in general, and in my legs especially. Thought it would be a good idea to get an actual workout plan targeting what I've got going on instead of me just killing myself on the bike or something. I don't know what impact this will have with work, but it's something I'll have to work out.

So that's the news, mostly more of the same, and that's a good thing as far as I'm concerned.

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...

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.

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...

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:)

New medicine

I've been happy with the Tysabri infusions for my MS. They seem to clear my head and give me more energy. Tysabri's primary goal is to prevent new lesions and relapses, the other stuff is just a bonus. So that's been going pretty well, we'll see if it has stopped new lesions from forming when I get my next MRI's done. In the meantime, I'm still having issues walking around...

I had originally gone to the neurologist in order to get some medicine to help strengthen my legs. People had been repurposing a drug that was designed to help people overcome opiate addiction for this. It's called 4AP and has been around forever. There are very few side effects and you can get generic versions for pretty cheap. There's a bit of a catch though. The dosage for MS is so much lower that you can't reliably break pills to get accurate dosages. So you have to go through a compounding pharmacy. The other thing is that since it wasn't cleared by the FDA for use with MS, insurance wouldn't pay for it.

Well, a company went ahead and did the clinical trials and came up with a time release formulation. It got approved by the FDA under the name Ampyra. It is tremendously more expensive of course, someone has to pay for all of those licensing fees and clinical trials. I have decent insurance, so my co-pay i just a little lower than buying the generic, but the insurance company is paying a fortune for it. And people wonder why our medical costs keep going up...

 

Anyway, I've only been on it for a couple of days but I can already feel some positive effects. My legs don't have as much jelly in them and I have a lot more control over my feet. I can now shake the water off of them when I get out of the shower, haven't been able to do that in a while. I also feel more of my legs as well. I can actually feel them burn a bit when I go up the stairs, my muscles were pretty much numb before. Of course that also means I can feel pain in them better. I strained my right quad a couple of weeks ago. I have been feeling it tighten up and get weak on me, now I can feel the pain. I had a particularly viscous cramp in my left calf the other night, it has been smarting since, but now, OW! So, progress? I think so. I am walking better, and I'm hoping that with some feedback from my legs I can now improve my strength.

One other thing that has happened is that I have more energy. My first day back at work was pretty bad. I had been feeling run down over Christmas, wasn't much of a conversationalist and had no energy. I only lasted 2 hours at work before I gave up and went home. A pattern has developed where I feel pretty run down in the week leading up to my Tysabri infusion, I figured I was looking at a long week until I got it. The Ampyra seems to have helped considerably. I can't think of any other reason for my, for lack of a better word, feeling normal these last couple of days. So I am cautiously optimistic. Modern medicine is amazing, I sure am happy to be living in times like this!

Early warning signs of MS

I'm writing this post for anyone that might find it via Google in the future. Looking back, I can see a lot of early signs of my MS, but because I didn't pay enough attention and couldn't find anything about them, I ignored them. Would I have gotten treatment sooner? I dunno, but it would have been nice to have the option.

 

Keep in mind that MS is a disease with an enormous variation. It affects different people in different ways. These are the things that happened to me in the years leading up to my diagnosis, when it couldn't be ignored any longer. Having these things doesn't mean you have MS of course, but they were early indicators for me.

Tremors while yawning. I noticed 4 or 5 years ago that when I yawned, my arms and hands would shake. It seemed a little odd, but harmless at the time. Now, I know it is a symptom of screwed up reflexes, and that is going to point towards some sort of neurological issue.

 

Leg stiffness. 5 or 6 years ago my legs started to lock up on me in the morning. It didn't hurt, but it would prevent me from doing anything until I loosened up. Here's the way it worked, I woke up, decided to move and then BLAM! my legs would go rigid. It would last about 30 seconds and then everything was fine again. A few years later this would happen to me any time I sat down for a while. I chalked all of this up to getting older and stiffer. It never really bothered me, but it was odd. Now I know that this is called spasticity and once again, points towards some underlying neurological issue.

 

Weak legs. The first time I noticed this was about 5 or 6 years ago. It was right after a hurricane (can't remember the name) and my mother;s place had been hit fairly hard. I went down there to help with the clean up. One of the things we needed to do was to find and bring back all of the sections of fence that had been strewn everywhere. My stepfather and I would wander around looking for pieces and then carry them back. It was hard work, but nothing too outrageous. I was able to do this for, oh I dunno, an hour or so when my legs turned to absolute jelly. This wasn't a normal tired feeling, this was "about to fall over" kind of feeling. I chalked it up to being out of shape, which I was. It bugged me a little since it was so unusual, but I had a handy explanation and let it go. This happened again 3 years later on an extended hike in Yemen. Once again, it was a longish hike, maybe 12 kilometers or so, but nothing too bad. Yes, there was some minor climbing, as in there was a grade, but really nothing any sort of person in reasonable health couldn't handle. Once again, I started out fine, but about 2/3 of the way through, my legs totally gave out on me. I was wobbly legged and unbalanced for the rest of the hike. In both cases, once I sat down for a half hour or so, I was fine. There was no soreness, or even tightness the next day. This is not normal. If you overextend your muscles, you should expect to feel the burning sensation from all of the lactic acid building up. You should also feel the effects over the next several days. I had neither, if anything, my legs felt a little numb. I have no idea of the mechanism behind this, but it is a common feature of my life now, and it is consistent with having MS.

 

Numbness. I had been working in retail for 7 years or so when I noticed that there were times when I felt that my feet were numb. Looking back, it wasn't really numbness, it was loss of proprioception. Doctors test for this in a variety of ways, but the most descriptive is that I could no longer feel vibrations against my foot or legs. In day to day sensations, it feels like the inside of my leg or foot is numb, like I can't feel the muscles in them. Once again, I assumed that since I was on my feet for so long, and for so many years, reduced sensation was a normal thing. It's not. Nowadays, the loss has progressed such that I don't actually know where my feet are or what position my legs are in. It is fairly common for me to wonder why I can't move my leg only to realize my other leg is on top of it.

 

Those were the first symptoms that I had for MS. They started to present themselves about 5 years before I was diagnosed. It is possible that if I had pursued any of these things that I could have prevented further loss. The punchline of this whole thing is that those things are not normal, you should at the very least have your GP do a neurologic exam (test reflexes, etc.) if not see a neurologist if you have any of these issues. All of these started as intermittent things and gradually over several years became more pronounced. Just get checked out, there's no downside...

Unnerved (MS related)

The day after my first Tysabri infusion, I felt pretty good. Part of me thinks I felt better than normal, but like I said before, I'm going to try to not go crazy looking for improvements just yet. Of course, I also said the same thing about side effects. Well...

I woke up at 7:00 with a splitting headache. I've woken up with headaches before, but not like this one. I got out of bed and popped some alieve. That's when I notice something else, I can't look at anything bright as it intensifies the pain. Doh. I go back to bed and wait for the alieve to kick in. Half an hour goes by and I still have my eyes closed. The pain has subsided a bit, but it is now concentrated in an area behind my right eye. I open my eyes and try looking outside. Bad idea. Headache is still there...

 

I called into work and told them that I was at the very least going to be late and that I might not show up at all. I fell asleep again and woke up around 11:30. Still with the headache, still concentrated behind my right eye. I decided not to go to work. It wasn't as though I was debilitated, but I was starting to worry a bit. The nurse told me that some side effects of tysabri occur during the month, not just right after the infusion. She also said the really bad ones would seem like a stroke. Hmm, this was a rather bad headache, not really what you think of as a stroke,  but there was that odd localization... I did a little googling and found out that yes, headaches are a rather common side effect. By 3:30 I was feeling OK but a bit shaken. I was also relived/horrified that I have the next two days off. It'll be good to see if this is an ongoing thing, but it does look suspicious. The thought also occured to me that I am now taking drugs to counteract the side effects of other drugs. Yes, I know that over the counter pain killers barely qualify as drugs, but it is a situation that I was hoping never to get into.

Going forward, I think I can handle this if it happens again, at least after the alieve kicks in. I think I'll start looking for those positive effects now that a negative one has made itself known to me.

 

First treatment down

As expected, it was a non event. Spent a little over two hours with an IV stuck in me. I was the only one getting an infusion that late so I sat there and chatted with the nurse the whole time. I think I've got her convinced to go to Yemen...

 

And now comes the freak out period. This drug is known for having one very rare, big possible side effect (an infection usually leading to death) and a whole host of little, potentially annoying ones like urinary tract infections, joint pain, headaches, nausea, etc. The big one is easy to notice, she said you'll think you're having a stroke. The trick with the other side effects is that they are common enough with MS anyway, so it's hard to know what is causing the problem.

The drug is supposed to help prevent new lesions and hopefully stall the progress of the disease. There are lots of reports of people regaining strength and walking ability though. The nurse was real careful about making sure I understood that I shouldn't expect those things to happen with this drug, but they could happen.

I promised myself I wasn't going to make myself crazy looking for effects, but  i don't see any way around it. I'll be carefully watching for both positive and negative effects and wondering if that pang or momentary good feeling is caused by the drug or just my imagination. Please bear with me while I quietly go nuts...

Treatment starts soon...

I finished a slew of phone calls yesterday that set up my Tysabri treatments. Today, I got a call from my neuro telling me that my stuff is in and when can I come in? Exciting stuff. Of course their times and mine don't line up for this next treatment, I'm going to have to ask work to give me a day off that is already scheduled. I'm really excited to get this started.

 

I can't believe how many hoops have to be jumped through to start the treatment. A pharmacy selected by my insurance company called to make sure I was OK with them supplying the medicine. Umm, NO! I have total devotion to another nameless pharmacy! That was odd, but I had another voicemail from the company that makes the medicine so I had to call them back too.

They have assigned me a case worker for the treatments. Once they start, they will assign a support staff, or something for the treatment. I have never heard of so much baggage to go along with a treatment before. Tree, there is a rather nasty complication that can occur, namely death, but it has only occurred in a third of a percent of the people that have taken it. A third of a percent, I think there is a higher probability of dying on the way to work.

 

Anyway, I'm excited. With any luck I'll actually get some healing out of this. Odds are it will prevent me from getting worse. In any case, it does feel good to be doing something.

Saw the doc and looked at the MRIs

Saw my neuro today. The MRIs were better than I had thought they'd be. Yes, there were a few new lesions in my head, but they were pretty small. The big one I had before on my spine has healed up to a large degree.Turns out there are more lower down on my spine, but I'm not sure if those are new or not.

So, it doesn't look as though there has been much progression, WHEW! One thing that really stuck out in my mind was how one lesion can have such a large effect. When I had the first MRIs done, I was having some trouble walking even a half mile. Nowadays I can do a mile fairly easily. I might still weave a bit and stumble, but I can do it. That one lesion caused a lot of my problems. It occurred to me that another one could be just as bad, or worse...

So that cemented it for me. I am going to start on Tyssabri next month. It is a once a month infusion and it seems to have the best results of all of the MS medications out there. I am also going to try a medicine that is supposed to help send signals down to my lower extremities better. I'm hoping I'll get some of my strength back with that.

My doctor had a good analogy for how he treats MS. He sees big things coming for MS in the future. So for now, what he wants to do is keep things from progressing so that I will be ready for the new treatments that come along. He wants me to stand there with my finger in the dike for as long as it takes to get an actual treatment. I'm OK with that. Let's hope that those new treatments come along soon.

Turns out I'm pretty healthy

I'll always remember my grandmother's next door neighbor. Mike was a nice guy, a great cook (in the neighborhood grilling kind of way) and as far as I could tell practically a saint when it came to dealing with his abusive mother-in-law. He had a whole variety of health issues. He was a long time diabetic, and the last decade of his life he suffered through a series of heart issues as well. He ended up dying of cancer...

Moral of the story is that just because you have one physical issue doesn't mean you can't have others. Most of my worrying involves MS of course, but in the back of my mind is the worry about my heart and cancer. I don't exercise as much as I should, and I've had more than a few suspicious moles cut off of me.

Had my physical today and it looks like I'm the picture of health. All of the cholesterol, blood pressure, etc. numbers are right where they are supposed to be. I don't really have any other complaints (other than the regular ones) and there aren't any sign of worrying moles.

 

So I'm feeling pretty good. I'll have my neuro exam on thursday. I'm expecting bad news from the MRIs lesion-wise, but I'm also pretty sure that I'll start a treatment program too. With any luck that will lead to an improvement in my motor skills and maybe even some healing in my neurological health. Don't worry, I'll keep you up to date on what goes on. On second thought, worry cause I will keep you up to date:-)

MRI round 2

Had my second round of MRIs this week. I had my first one early in 2009 when they were trying to diagnose me. The experiences were quite different. I was a little apprehensive about the first one since I had never had an MRI before, it turned out to be no big deal. The machine resembled an industrial press (think of the machine that killed the Terminator in the first film). I laid there, staring at the top plate and listened to the best of the 70s radio station they were playing.

I should have known this was going to be a little different as soon as they told me to put my earplugs in. I did so without thinking. They then strapped my head into a brace to prevent it from moving. It was quite a bit  more sophisticated and tighter than the first one. They then fed me into the tube and started the scanning.

Man, even with the plugs in, it was loud. It was loud but interesting.  Anything that is regular has a rhythm and therefore reminds us of music. the first sounds resembled an electronic digerdoo with a mechanical, industrial rhythm section behind it. That then morphed into various sounds that kept me entertained for a little bit. Recordings of noise are never the same as experiencing the sounds directly and I was genuinely captivated for a while.

But only for a while. The trouble with MRIs is that you can't move. You have to stay absolutely still in order to get the clearest results. The brace helps, you would really have to try to make a  big movement with it. The thing is that there is nothing to distract you, there is nothing really to look at, there is nothing to hear except the clanging and gyrations of the machine. You end up dividing your time between the merest physical sensations and your thoughts.

My main physical sensations were the myriad itches you get when you can't move. Little itches on your nose become incredibly annoying once you can't touch them. those were nothing as compared to the other one though. About 20 minutes in (out of an hour or so) I really had to pee. That started to become an issue fairly quickly but there wasn't anything to do but gut it out and hope I didn't wet myself. Let me tell you, once they rolled me out of the tube and undid the harness I was on my way to the bathroom. The nurse said I had to sign something before I left. I still have no idea what I signed...

The other thing you can't escape is your thoughts. I can tell you that hour was spent thinking more about MS than the combined year before. I mainly go about my day ignoring, or trying to ignore the effects that MS has on me. There's no running away from it when they are scanning your brain for damage and you can't move a bit. Time drags on and you get so wrapped up in why you are there that you get a little nuts. I can understand why some people would flip out. If you're predisposed to thinking the process is going to be awful, there are plenty of things that can reinforce that. I didn't flip out, but I was left with a real morbid aftertaste to the experience.

I'll talk with my doctor next week about the MRIs. We'll discuss treatment options then. I might need a vacation to lighten my mood...

Root canal

Had the first part of my root canal today. The procedure really wasn't a big deal. Yeah, it did feel really odd to have the dentist essentially roto-rooting my tooth out, but that's about it. That may in no small part be due to the fact that the nerve in that tooth has died. The pain I felt on friday and saturday was most likely the last hurrah of that nerve.

Can't say I'm real disappointed to hear that the nerve is dead. That thing has been bothering me off and on for three years. It's a relief to know that it isn't going to be causing me any more pain. On the other hand, the infection that caused that nerve to die is something that needs to be taken care of, hence the root canal. I'll be popping antibiotics for the next week and I have at least one more visit, but I'm hopeful that this will be the end of the issues for this tooth.