Hope

Let me talk about hope.  A term that is tossed around a lot when MS is brought up.

It kind of feels like a distraction, to be completely honest. I understand the end result is the same. A world free of MS, or whatever is said about the hope to bring an end to MS.

This is where I begin my rant about capitalism and start sounding a little bit conspiracy theorist. So if you’re not inclined, move along please. This is my personal opinion, and if you don’t like it tough.

Last I checked (which was a while ago – it could have increased significantly), my Tysabri infusion bills my insurance company around $12,000 every time I get 300mils of natilizumab infused into my veins. Granted, due to the PML risk my infusions got moved to every two months, so it works out to ~$6,000 per month to treat my Multiple Sclerosis. That is more than I (or my family as a whole) make in a month.

Now I ask a question. With such a cash cow, do you really think these huge drug companies are looking for a one time cure (no recurring income for the drug companies) or are they just going to keep putting out more and more expensive treatments to keep you going so that they can keep draining you financially (guaranteed income for the drug companies)? You can guess what I think about a cure coming from a major drug maker.

Per usual  it is up to the little guy, the mad scientists, to come up with a cure to MS. Too bad all that time and effort is being wasted on treatments. But I am happy to have them. Tysabri really seems to have worked well for me. As always, if you ignore the PML risk.

Oh Yeah

I am starting to feel so much better. I must’ve gotten a good dose of the Ty this time. Honestly, I was on the way up on the drive home after the infusion. Feeling good today. Not perfect. The muscles are still not yet fully relaxed in my neck and calf. My entire body too, but those spots especially. I also feel so full of life in my head, if that makes sense. I feel like I’ve been rejuvinated. Tysabri, you are a beautiful drug! Even if you do have a dark side.

I’ve been wondering a lot as of late if I’d even be aware of that muscle tightness were I not to relief via my infusions. Of if relief were not brought, would I be a miserable person at this point? I surely do hope that I never meet the dark side of Tysabri.

Another needle in my vien

And i feel like i so needed it. Like I have mention I have been feeling really run down again. Not a fun feeling when you’ve got a family that needs constant attention. I’m not sure how long it’ll take to feel more energy in my life. Could be a day or a week. Only time will tell.

 

Only two more days

Until i receive my next dose of natilizumab. Again this last period of time before infusion leaves me jonesing for my next dose. I’ve been lethargic for the last week. No energy, hence missing last weeks post. The MS drain can be killer. Fortunately I don’t seem to need it as terribly bad as last time. Although I feel like I didn’t have  my typical recovery from the last infusiom. Hopefully this next one will take care of the lethargy. I’m getting tired from fighting..this tired. I’ll let you know this weekend, should I remember.

MS run down

Man, it’s been a rough week. I’m not sure if it’s the kids are amped up from being in the house all winter or all the stuff that has been going on, but I am so worn down this week. I am so low on energy at his point. Every day it seems.

Is it MS or is it the kids? The proverbial MS question that is always asked by me. It’s probably easier to blame MS, but I an’t be sure what is the true answer.- unless I were to have an attack. And I do not want that!

Good thing we’ve gotten a new bed. It is helping a little bit, but we’re in the period of adjustment with the new mattress soo that’s a bit of a kink in the equation. My back has been hurty, while it realigns to the new mattress #FIRSTWORLDPROBLEMS!

Most of all I need to sleep for like 48 hours so that I can recharge my batteries*. I cold also use to ditch my kids for that period of time as they are a majority of the reason I have lack of sleep.

You down with OPCs?

You know oligodendrocyte progenitor cells. Yeah, I didn’t know that either. They are the CNS cells that will repair myelin. They also are able to transform into neurons and astrocytes. Effectively, the linked article says they are  supposedly the ‘cure’ to MS and it lies within our own bodies. As long as we can influence them properly. OPCs are pretty capable according to this Wikipedia article.

 

Again, it is a matter of getting them to do what we want. Studies in those poor mice* are showing promising results. That’s a good thing. But at this stage, it’s looking very early in the research. So It’s probably ten fifteen years off – if it works safely – before this treatment gets used in the public. That’s what my experience tells me anyway when it comes to new treatments for MS or most other diseases. I know about fast tracking but after jumping on board with Tysabri so quickly and basically being stuck on it with no exit strategy, I’m definitely taking the more cautious approach with drugs from here on out. And I’m not knocking Tysabri, it’s great and I’ve not experienced an attack (knowingly) in almost the last decade. I’d say that’s a pretty glorious drug. And I needed to get on something very effective on the quick at the time, as the Avonex wasn’t stopping progression as much as my doctor wanted.

 

*I’ll probably come back as a lab rat in my next life, if you’re into the whole reincarnation thing.

The thing with MS

Really one of the biggest problems I have with MS is wondering if the small problems I have are MS related or not. I’m not talking about the obvious stuff like the spastic calf or numbness on the left side of my body. All of that can be attributed to past MS activity. About what I am talking is the little stuff. The time when I spend too much time negotiating cramped areas in the house during home improvement season (indoor) and My other leg and upper back start hurting. Is it MS? I had to wait the weekend to see if the pain started to go away – which it did, thank goodness. But right there lies the problem with MS. One of the toughest problems is knowing g when something is MS related.

And I really wish there was something I could do about this cognitive fog. I may be wrong in calling it as such, but that’s the most apt name I have heard so far.. I had this post typed up this weekend but forgot to schedule it and completely dropped the ball on posting it. So I’ll fudge the post date and pretend that all is well. But I thought I posted it, doesn’t that count? The joy of MS.

Bummer

I’ve missed a week worth of deadlines now. Busy. What can I say?

Kids

Life

MS

The MS has been unusually rough this go. Usually after my Tysabri, things come around. But not so this time. A lot of issues that go away after a Tysabri infusion just haven’t left this time.

The spastic calf is one of my biggest complaints. Other issues are popping up too. As always it goes down to is it MS or am I just getting older. I’ll give it the weekend and see what happens.

So yeah, a lot on my plate. I updated the framework of my personal blog, which required a different theme. Totally different look. Not sure if I’m happy with it. All in the back-end of things. I prefer to have the OS’s native flavor package installed anyway. Which actually puts me back a couple of versions of the framework. I am also trying to get that working on a beta server now. #DIGRESSING

On top of it all we’re moving into the home improvement part of the end-of-winter around here. Lots of preparation for a tremendous amount small jobs. That’s the thing. The only time I’ve let someone in my house to work on it was when we first had sewer problems. The guy who failed at fixing the sewer problem the time before. And the HVAC guy once right after we moved in. Wouldn’t you know it there was enough construction dust in this house to keep clogging up the furnace filter ever two weeks when we first moved in a few years back. Awesome dude put it under the warranty

And yes, I will attempt to resume an attempt at normal posting.

My Calf

Yeah, talking about my calf again. No, I do not have a young cow, I have a spastic calf. It is agonizingly spastic. Not so much that I can’t do anything, it just really nags me most of the time. I’ve talked about it before, so I’ve conveyed how it is the most annoying part of my MS, no?

And therein lies the problem. It is MS, a neurological problem. A nerve problem. And the treatment options for nerve issues aern’t all that promising (ask my buddy with CRPS about that). My neurologist basically gave me three options:

1.) Muscle release. A surgeon cuts you open and manually releases your muscles. NO THANK YOU at this point at least!

2.) Get a baclofen pump installed. I ASSURE YOU I AM NOT A CYBORG* – so no, no thank you on this one.

3.) Take a baclofen orally. YES, yes, yes, omg yes! Given the options this was the only acceptable one to me as it is non-invasive.

Obviously if you’ve been even skimming my blog you know that I am using baclofen orally, and it is working pretty well. Taking it orally at this point is the better option,  as when I receive my Tysabri infusion as I did last week or so, the calf spasticity usually goes away – in most cases. I can drop or at least decrease the baclofen until it’s needed again. Couldn’t do that with a pump.

After this treatment, though, the spasticity is still noticeable, however it has decreased out of the agonizing stage. Which is good. However, it is kind of scary that it is still around even if barely. Perhaps I am more in tune with it this time? Maybe the dose of Tysabri wasn’t as good this time? I’ve had pretty mild ride with Tysabri. The biggest side-effect I’ve experience – and this was early on in treatment – is the lethargy after getting dosed and sleeping away the rest of the day. Otherwise all the other effects, of which I know, are completely desired. Keep ’em coming! Especially since there doesn’t appear to be an exit strategy with Tysabri that doesn’t involve luck or a big relapse.

Here is a stretching program from youtube from Trevor Wicken, when he points to the spot on his calf, that is exactly where my calf feels tight.

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I’m not sure if he’s an MSer or not, but he obviously knows his stuff. I’m impressed. After I get my calf stretched out, I’m gonna try the whole body stretching if my kids allow it. So probably not.

*Nod to monsters versus aliens.

 

 

Spasticity*

This may be the most obvious problem for me that arises from having MS. And it is almost always annoying. Sometimes are worse than others. At times, usually about a week after my Tysabri infusion, my calf spasticity will lessen greatly, almost to the point I forget about it. Then there are times, like the weeks before my last infusion, where it is down-right excruciating. I’ve found that stretching my calf by placing a roller or rolled up towel under my foot then leaning forward with the other foot helps…a lot. But the calf spasticity remains. Stretching does not completely relieve the agony. Having my wife massage the exact spot on my calf does bring great relief, but it is also short-lived. Then there is the medication, which seems to be specifically made for my spasticity since it helps so much. The drug is baclofen. Apparently abuse of baclofen is a problem in that Olympic cheating country (Think OAR), which makes me think those motherRussians have stomachs of iron. As I’ve never had to take food with medication to avoid an upset stomach, but with baclofen it is mandatory for me.  That ‘forced’ eating along with the decrease in miles peddled have resulted in weight gain, which sucks, but as always I am digressing.

Have spasticity problems, here is where I got the roller idea. It also includes four other stretches for common spasticity problems. Stretch it out my fellow MSers!

*And have I mentioned how much I hate the word spasticity? I makes me think of spastic in terms of people who have very poor emotional control.

And try searching for spastic calf if you’d like an unrelated laugh.