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.
I’ve missed a week worth of deadlines now. Busy. What can I say?
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.
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.
Three needle sticks today. Shy of the record four sticks. Wasn’t terrible, even with the needlephobia.
That was fun. Veins in my left hand is the winners it seems.
As I mentioned before, my infusions happen every two months/sixty days. Most of the time I’ll get a bit worn down a couple of weeks before being infused with Tysabri, but this time the spasticity in my calf was intolerable for around the last few weeks prior to infusion. Deep thought was off the table for that period of time too.
Getting infused with that sweet Tysabri
Already my calf is getting less spastic. It isn’t better, but give it a few days and I’ll be off my baclofen and life will be way easier. I’ll be able to think too – hopefully – I’ve still got three kids in the house including a two-year-old gone wild.
The nicest part was my wife getting my appointment moved from 14:45 to 10:30. That means I get to have an awesome hospital lunch. Yeah, it may be hospital food, but at least it is food to have during my infusion. I was gonna stop and get a big old authentic steak burrito if my appointment had not changed. At least I didn’t have to stop to get food.
And for a bonus, my first public video on youtube: I apologize for the terrible audio. Go easy on me.
Attack, episode, exacerbation, relapse.
I do dislike the last term. Makes it seem like you’re dealing with illicit drug problem
All of these terms are used to describe an MS event. And I’ll lead off with uncertain to describe episodes. If you’re having an attack, your brain is most likely being damaged. Don’t worry, it is not as bad as it seems. You think brain damage and you think of someone who was in a seriously traumatic automobile accident or a major workplace mishap. No, it likely won’t be that. We with MS get our brain damage in much smaller doses. Micro doses if you will. and that is why medication to stop progression is so damned important in my less than humble opinion. But, as always, I digress.
Like I started, exacerbations are uncertain. Anything but. You could have an episode, like my first, where I thought I was having loss of equilibrium in my ears as my balance was slightly off. It was such a problem I even went to a doctor. I always think he knew but didn’t want to disclose MS as I didn’t have insurance at the time. I was starting a new job and insurance lapsed without the COBRA coverage. Young and dumb. It was nothing but time to allow that episode to heal away. And that it did – seemingly – resolve completely. I had no idea at the time of my Multiple Sclerosis. I thought it was a bad earache
My second attack was quite the eye opener. It was a fuzzy time, as my memory seems to have suffered a lot in that episode. I remember it mostly as being bedridden as I was so off with my balance. My vision doubled. Not in better eyesight, as in I was seeing double everything. Take my advice, don’t drive in that state.I knew at this time I had MS, yet had never knowingly experienced such a serious exacerbation. When it occurred – and it hit hard – I was more capable of dealing with what was happening to me. Good thing too, I was absolutely out-of-action for about a month. I ended up taking a three month sabbatical from my job because of that MSBS. Thank you FMLA.
As I mentioned I had already known I had MS and was receiving the care of a MS neurologist. He put me on a steroid, Solu-medrol. I’ve mentioned it before, so I won’t go into too much detail other than IT SUCKS. Especially when you have to drink it. DO NOT TAKE THAT OPTION. And expect to put on some weight. Perhaps a lot. I’ve never experienced a hunger like that,.
So hopefully I’ve explained what an MS attack can be like. There are extremes. From barely noticeable attacks that you mistake for something else to jaw-dropping, life stopping, making your body unusable for anything but life-support exacerbations that are breathtakingly momentous. (that last sentence kind of reads poorly, sorry)
Ocrevus was the most recent medication brought up to me when the great Dr. K last talked about finding a Tysabri alternative. Once again, Tysabri is working absolutely great for me, and I’m in no hurry to switch off it. But given all the safety issues, It’d be remiss to not even consider an alternative. The great Dr. K hasn’t yet given me the efficacy rate of Ocrevus (or I forgot), probably as it’s so new, however he did mention that it is proving very effective for those who take it. Something to consider, but I have that old school ‘if it ain’t broke, don’t fix it’ attitude (unless it’s involving technology).
Ok, so what is Ocrevus? It is a humanized anti-CD20 monoclonal antibody. Yeah, what? Again? I don’t make this stuff up. I’m not that familiar with it, but here is what I take. Ocrevus binds to immune B cells via the CD20 receptor and kills them. Wait? That can’t be good? Except when your own immune system is attacking your CNS, it’s probably a very good thing. And it is proably why I saw all those mentions of being immunosuppresed for a bit while starting it.
As for frequency, that is where this drug seems to shine. You only need to receive Ocrevus twice-a-year. Every six months sounds rather nice. I’ve mentioned before, many times actually, my needle anxiety and this would make for four less infusions per year. Better than the six infusions per year, which isn’t a problem for me – anymore at least. The post-infusion danger zone seems to be longer on Ocrevus (24 hours observation) versus Tysabri (one hour observation). On Tysabri, they have me sit in the ambulatory infusion center room for an additional hour to insure I have no reaction (should happen for everyone on Tysabri, unless your nuero says you don’t have to be observed). With Ocrevus, I imagine they send you home on self-watch for reaction symptoms after a bit of observation. Though, I am not yet sure if they keep you for a period after infusion.
Ocrevus does carry the same brain destroying risk as Tysabri: PML. Since it also has a PML risk, I will stay on the miracle MS drug Tysabri for as long as possible. It is working great for me, I barely realize I have MS because of it. But if I ever need to switch to another medication, it will probably be Ocrevus. At this point in time anyway.
Tecifdera is kind of special to me. Not that I’m on it. I almost switched from Tysabri to Tecfidera under the great Dr. K’s suggestion. He cited that there was no reported PML cases (at the time) as the reason for wanting me to switch. Boy, I am seriously glad I did not make that switch.
Dr. K said, if you recall from earlier posts, Tysabri is seen to have ~80% effectiveness at reducing exacerbations (100% in my case). Whereas Tecfidera has only ~50% effectiveness at stopping flare-ups. Plus Tysabri is, I assume, engineered in a lab in a far away land. While you can see train cars going by filled with Dimethyl Fumerate. Yet they charge almost as much as Tysabri for it. Probably because of drug testing/safety and whatnot, but it just doesn’t seem right how much they charge for MS medications when they roll by en mass on a train…but that’s another post.
So yeah, the big point that was turning me on to Tecfidera is that it’s a pill. No needles…sign me up! Except for that lost efficacy. And it turns out that there is PML risk with Tecfidera too…perhaps from earlier drug interaction? I’m not exactly sure. Not to mention the other side effects Tecfidera can cause. I am just glad I did not make that switch. Seriously glad, as greater effectiveness plus once-every-two-months dosing isn’t that bad…even I could deal with the needles that infrequently. And I mean it, Tysabri is working like a charm for me. So I stuck with what I know, and I am very happy with that decision…thus far.
And it isn’t the last alternative I’ve been offered, which of course I’ll try to get to in the next post.
AKA Tysabri. My MS drug of choice. And it is kicking butt and taking names!
Tysabri may be one of the most effective medications in fighting MS. But it does have a rather hefty side effect possibility. I’ll get into that later.
What is Tysabri. It’s a monoclonal antibody against the cell adhesion molecule α4-integrin. Yeah, I’m with you…WHAT? Simply put, it stops the transmission of immune cells through the blood-brain barrier. And that is all I can really say about this miracle drug, except that whatever it is doing seems to be working outstandingly for me. The great Dr. K said that it has about 80% effectiveness at stopping relapses, but in my experience it’s 100% effective (and I say this with my fingers crossed). Aside from the fact that it is used for Crohns patients and is being explored as a cancer treatment. There might be some use to that as chemotherapy used for MS patients experiencing a exacerbation. But as always, I digress.
Tysabri is effective as can be, this much is true. I haven’t had an attack/exacerbation/flare-up since I’ve stared. My wife AND the great Dr. K both said they have not noticed any disease activity on my MRs. YES! The lack of side effects is nice, especially when I got switched to once-every-two-months dosing, which allows a bit of immune cells though the BBB to fight any JCVirus that may have slipped through to prevent any occurrence of PML. The post infusion lethargy doesn’t happen anymore since the switch to the longer dosing schedule. And that is the only side-effect I’ve noticed while taking Tysabri. A world better than the at least one-day-a-week of feeling like you’re fighting the flu while on Avonex, or the once-weekly stick of a needle. Plus Tysabri is way more effective!
But there is a dark side to Tysabri. I’ve mentioned it before, and it is scary as can be. The side effect, PML basically destroys your brain. It erases you from the inside. I’ve mentioned this before also, but is worth repeating. PML is what killed a lot of AIDS patients in the 1980s and (at least the early) 1990s. Yes, it is a very scary prospect for me. Something I contemplate a lot. A whole lot. But with the effectiveness of this medication, plus the great Dr. K. telling me that PML risk seems to decrease the longer one is on Tysabri, it is a risk versus reward situation. I’m dong well, keep me on it, right?
Well, that’s where the other part of the dark side of Tysabri comes in. I possibly would’ve reconsidered it if I knew about this first. Dr. K only mentioned this when he talked about switching to Tecfidera. I never switched, and I’m happy with that decision. It is when a person stops using Tysabri they experience what is called a rebound relapse. A bad relaspe from what I take from Dr. K. Effectively, a Tysabri holiday or break (or just giving up on it) will allow your immune cells to cross your BBB…with a serious vengeance. And the resulting flare-up will likely kick you up a bit on the EDSS. But ultimately, I took the PML risk to stop the progression of MS. And that it has done.
Tysabri is super effective, and I wouldn’t want to stop it given the choice. With the rebound relapse issue, for now, I am stuck on Tysabri. Not the worst of situations, at least at this point.
So yes, I did not know the dark sides of Tysabri when I first started it. It was a crazy time and I wasn’t thinking as clearly as I should have (can you blame me?) None-the-less, Tysabri has been one helluva DMT and I’m glad I got on it when I did. It put the brakes on my MS progression and has allowed me to live a life almost as if I didn’t have MS, aside from the once-every-two-months infusion. The six times a year I am reminded that I suffer from a serious neurological disorder.
As I mentioned previously, in the 1990’s medications became available to slow down the progression of multiple sclerosis. These were the interferons: Avonex (β-1α), Betaseron(β-1β), and Copaxone (Glatiramer acetate). The ABCs heralded an option to proactively treat multiple sclerosis, from what I’ve learned. However, what did people do before the advent of the ABCs? As I also mentioned in an earlier post, it was rather archaic.
When a person with MS experienced an attack/episode/relapse their neurologist would prescribe one of two things: a steroid or a chemotherapy. I had a steroid during one of my two major attacks I’ve experienced. The steroid was a trip through hell, and I’m not even paying attention to the mood swings. It was solu-medrol. This isn’t your typical prednisone people, it is methylprednisolone. The name looks pretty much the same but they are way way different in their effect. It wasn’t a simple pill to take (I got those during the first attack), it was supposed to be an intravenous administration over five days with a single dose per day. As I mentioned I absolutely loathe needles, and when my neurologist gave me the option to drink the solu-medrol,I took it. After I manged to put down the first smoothie/solu-medrol, I decided to never do that again once the course was finished. Honestly, I think it’d be easier to drink gasoline even though I’ve never tried that. Seriously, heed my advice: do not take the option to ingest solu-medrol. Honestly, that second attack was a doozy, and I’m glad I had something to help get me right again. The diplopia (double vision) I experienced was a horrible and prevented me from doing everyday simple tasks like ride a bicycle or drive. I am so glad it’s in the past now, and I recovered pretty well – my vision returned to normal. I did end up with some numb spots on my body though. Even with the numbness, it was a day of celebration when I realized the diplopia was gone!
As for chemotherapy, I’ve never had to be put on it. Which is a good thing. Having previously used chemo to treat MS increases your chance of developing PML while on Tysabri. Aside, chemo just has an awful sound to it, plus the hair falling out thing. Luckily, I likely won’t have to face that decision now. Chemo seems so to be an overwhelmingly chaotic and archaic way of treating MS, I wouldn’t even want to contemplate having to take it. It is basically poison they pump into your veins.
So I am thankful there have been a few different treatments that have come out recently. Avonex and Tysabri have saved me from further progression, but there are others. Here is a full listing of medications from the NMSS that are now available to treat MS.