Physical Therapy – Page 4 – Multiple Sclerosis & Me

Lemtrada – The Drug

It’s prolly the strongest drug out there…it’s also the most expensive one I’ve taken. When I opened the “cost” statement, I swear I almost fell off Soca Scooter – the length of time for approval suddenly made sense. The simplest way to explain how it works is to say it depletes the Tcells in the immune system. The thought is that when the immune system regenerates, it’ll be with “good” cells that will not attack the body and in turn cause nerve damage (it’s actually a drug that’s been on the market for a while but was repurposed to treat MS). So for a while after treatment, I was sure to protect myself best I could from getting sick/catching anything cuz there was no telling if/how/how long i’d take to fight it off (so jes in case, I didn’t go Miami carnival last year) and my doc had me on anti-viral drugs till January.

Of course, like all the drugs out there, it comes hand in hand with its laundry list of side effects. I won’t bore u with them but I will tell u that a nurse comes to my apartment monthly to collect 4 (sometimes 5) vials of blood and a cup of urine – this will continue for 4 years. Oh. I will mention that Lemtrada may cause an overactive OR under active thyroid. For the life of me, I can’t rationalize how it could cause ONE or THE OTHER…shouldn’t it only cause one???

Not trying to put goat mout(h) on mehself, but with my luck if I were to develop one, it would be under active and I’ll gain weight

On the last day of treatment I called my manager to let her know that all was well and she commented that I sounded better than I had in the previous few months. Interestingly, 4 other people said the same thing to me and looking back I realised that it had actually been a stressful few months leading up to the treatment.

I got a call from Robyn at the MSCA bout 2 months ago and she said that lab work showed that even tho my numbers were increasing, they weren’t increasing fast enuf so they wanted me back on the antiviral drugs. “GREAT!” She assured me that I didn’t have to be concerned; it was just a precaution.

Good news though – I had a physical done 2 weeks ago and my blood count is now back to normal…till Octoberish (when I go back in for round 2) – “happy happy” times.

Secondary Progressive Multiple Sclerosis

Well…

I wish I could tell u that it was simply the lack of exercise in trute OR like last year, was jes ah infection that needed to be cleared up and I moved on. No. Nothing so simple…not at all. I’ve officially crossed over the line from relapsing remitting MS to secondary progressive MS. the way I’ve been describing to everyone I’ve spoken to is “(for me) think about it like a stage 1, stage 2 type of deal”. Most (most) patients are diagnosed with RRMS – so essentially the person experiences relapses (exacerbations) for some time and then things go back to normal (my eyesight issues in 2003 (before i’d been diagnosed) and weird happenings in 2007). About 80% (naturally I would fit into that category) patients with RRMS develop SPMS. The major difference between the 2 is that SPMS patients experience fewer relapses but worsening disability – I really can’t think of another relapse after 2007. The medication I’m on (currently Gilly and in the past Copaxone, Tysabri and Tecfidera) doesn’t cure the disease, it slows down the progression so one may presumably argue that had I not been taking anything, I might have crossed over the line sooner than now.

I actually went to the MSCA on 9/2. Had an MRI of the brain – good news there cuz there’s been no change. I’m going to do one of the spine in December and I’m really curious about how that one will look – as much as I would prefer no change, I hope there some kinda explanation for the past month and a half. In light of all my issues, I convinced dr Gilbert to prescribe a bout of steroids – 3 days of IV administration at home. I won’t bore u with the steroid stories but they provided some relief altho not as much as the last time as I’d hoped. Oh I’ll tell u this part…the nurse came over on the first day and eventually left after 4 tries to get the IV line in because well the company protocol is that patients must not b stuck more. They sent someone else the next day and the third time was a charm for her. My veins never fail to provide “excitement”. Steups!!!

Thru this all, I’ve been okay – I’m dealing because what other choice do I have? Of course I had to let everybody know and (I think) they’re all feeding off of me so we’re all good. Hopefully this won’t cramp my style and I continue to go out and enjoy life although I’ve already missed one party (that I NEVER miss) because I jes wasn’t feeling up to it. After the party, Assenna actually emailed me to check up on me and make sure I was ok because she I wasn’t there (a warm and fuzzy moment for me, I eh go lie) 🙂

Sometimes I wonder if I’m in denial about this whole MS thing. Why haven’t I gotten angry? Why haven’t I cried (because I have it NOT because I cyah play mas)? And then I think, “well. What the hell is all that going to accomplish?” I’ll jes get my panties in a bunch and because I’ll b stressing, my body will probably shut down and then I’ll cyah move and get more frustrated and all that for what? For NAUGHT so best I eh bother.

So I’m adjusting to this new level and trying to do things as “normally” as is physically possible – altho, it’s been tough dealing with my decreased independence – and i’m afraid to try to do things because, well suppose disaster strikes? I’ve already bought my ticket for Miami carnival – looking forward to jes being in FL. This year, the plan was to play j’ouvert instead of going on the boat but I stickin now in light of everything. I’m still learning this body and what it can and cannot handle – have bout 2 weeks to make a decision.

I have another update but this post is already long enuf. I gone so!

Ah Shit…

AC cancelled gym last week Tuesday. When I found out, I smiled cuz Monday night (after limn on a school nite – those days of bouncing back fresh and chipper are long gone), I’d actually been thinking of canceling myself but didn’t. Dr. G was in town whole week and even tho reliving our glory days is out, I canceled PT and we limed again Wednesday. Thursday morning, I turned at the sound of my alarm, snoozed for my usual 45 mins, woke up and said, “I really really eh feeling gym this morning nah” so I canceled. As I was drifting back to sleep, I heard a little voice in my head, “Stacey. u know u’re going to regret this.”

Thursday nite, I struggled walking around this apartment! WDF??? I felt so unstable and unsure of myself that I used the scooter INSIDE here – something I never do. I went to sleep and right then and there decided that if I wake up struggling the same way, I wasn’t going to work. Friday morning, I was moving around a little better and was about to get ready for work and I said, “fcuk it. I’m taking a “Stacey” day.” Those of you who know me know how out of character that was – I don’t even like to call in sick when I AM sick. My wretched disease was kicking my ass tho so I figured it was ok.

I really really do hope that all of this is as a result of my not working out or doing any PT for the week and nothing more (it’s happened once or twice before but never been this bad). I’ve since done my PT routine and I’m moving around better but I’m not my normal self really. Went out Sunday and made it back with no drama so that, at least is a good thing. Went to the gym this morning (i was actually looking forward to it and couldn’t wait) and even though unfortunately the workout was a shortened one, already some body parts feel better but did it actually make any difference? time will tell i suppose.

Being sick really is a bitch!

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