20130817

What's The Issue?

I've been having a hard time with my left leg for the last few years. My knee constantly aches and my hip, less than the knee, also tends to ache. I am not a doctor nor a neurologist, but I'm pretty sure it's a MS problem and not an aging issue.

If you're reading this and a neurologist, you're probably in the same boat as my neuro. For this I do not blame him. I've been describing the pain that bothers me most, and not the pain that is most relevant to him.

The problem seems to have started when my gait changed after what was hopefully my last attack a few years back. And it's probably related to my left calf now being tight constantly. Perhaps I wasn't relaying that information properly to my neurologist, focusing more on the joint pain; at the time unaware I was throwing him off. But I am a bit concerned with how quickly he seemed to discount it as a byproduct of getting old and not probing further into the issue.

So here is what I'm going to do with my next neruo appt: I'm going to make mention of my knee and hip pain, and fully explain that I think it's a problem with my left calf tightness which never goes away. If he discounts it again, I'm going to have to find a new neurologist. I've been dealing with this for too long to have my doctors just discount my issues as aging problems. I want nothing other than to have him concur that my issues are MS related at this point. I'm not looking for drugs or disability. My job offers neither (I'm a stay-at-home dad). I just want him to acknowledge that the issue I am experiencing is a MS issue, and not an aging issue.

I'll give you a quick glimpse of my problem. My left calf muscle feels like it is wound up at all times, even when I stretch it or exercise it. This causes now near constant pain to some degree in my left knee and hip.

I am a grown man, I know better than you what a MS issue is and what an aging issue is...with my own body at least...in this case (In other words, I don't but that doesn't support my point). I hope that the failing here is my inability to convey my issue rather than you discounting it. I really like you man, but if my needs are not being met, I'm going to have to go shopping. I can tell you one thing you will never experience: The utterly frustration of complaining to your neurologist about a problem that I am having to only have it discounted as a an aging problem.

20130815

I hate MS

Yes, Multiple Sclerosis, but in this case: MicroSoft. Why did they have to pick a name that abbreviates MS? Every time I see MS I now think of Multiple Sclerosis, not MicroSoft. Good job picking a name that has an abbreviation synonymous with slowly losing your physical and mental abilities, jerks!

20130813

Vampires!

Doctors are vampires, every one of them. Today I had to cough up (not literally) 9ml of blood to satisfy my neurologist, or more appropriately, the stratify-2 study. Apparently they can determine your likelihood of developing PML based on your JCV antibody levels. If you're below a certain threshold, you're pretty much in the clear*. Here's to hoping I'm below that level also, and don't turn out to be the one unlucky dude.

20130807

I think I'm feeling better

I had my tysabri infusion today around noon. I was hoping for instant gratification, but alas, that did not come. I've still got that ripping headache, and generally I'm out of energy. I'm hoping a good night's sleep will take care of this.

20130806

Six Weeks...Too Long

Six weeks in between my infusions is rough. I'm desperately awaiting my infusion tomorrow. First time I've ever actually looked forward to it. Well, not really forward to a needle stick but that ohhh sooo good molecular adhesion that Tysabri provides. I've had a rough week. My energy is way low. I had trouble during my bike rides lately, just peddling on a flat surface seems extra difficult. I've had a horrendous, increasingly worse headache over the last week that makes concentrating so difficult. My stomach has been uneasy for the last week. Though I'm not sure if that's from a New Belgium beer tasting last week or just general feeling ewww. I'm tired, so tired banging out this post is difficult. I can't wait for my head to hit the pillow. Yeah, that's a good idea.

C'mon Tysabri, I can't wait to have you coursing through my circulatory system at full strength again. I miss the normality you provide. I hope I get used to this six week thing before December.