Mike + MS

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.

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.

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.

 

 

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.