Category: MS

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!

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…

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.

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…

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 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.

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:-)

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…