I’ve been spending a lot of time at home, as you know, while I am recovering from Round 1 of Lemtrada that I had the first week of November. Home, as it turns out, isn’t even very safe for me these days but it’s safer than the alternatives right now, so here I stay.
I knew when I got into this Lemtrada treatment that it was a big step. I knew it was going to be a long haul. I knew that there was probably a good reason why people aren’t lining up to have this treatment when first diagnosed and why insurance makes you suffer before they let you in the club…it’s a big bad drug, Lemtrada is. And MS is a big bad disease and I was tired of fighting it with pansy drugs that my MS seemed to laugh at. I mean, imagine calling drugs that straight up come with death warnings pansy drugs! But there you have it. My MS is a bad ass. She refuses to be ignored. She laughs in the face of your run of the mill monoclonal antibody infusions like Tysabri and Ocrevus. She is a force to be reckoned with. The bane of my very existence, she is.
The new post-Lemtrada me is pretty pathetic, you guys. I can barely move. Getting around my house is an adventure, one where if I happen to catch a glimpse of myself in a mirror whilst stumbling around my home I find myself wondering, “Jesus…Who’s that poor old crippled lady gimping around my house?” Oh wait. That would be me. Fucking hell.
Even sleeping isn’t easy in this post-Lemtrada world. My body has become a thing that doesn’t move around so well so sleep is what the doctor ordered for the most part, sleep and lots of water. So, I sleep and I drink lots and lots of water because I’m that kind of over-achiever patient but I’ve found that if I lay down for too long or sit for too long without standing up or stretching, my legs just stop working at all. When I say “stop working” I mean I literally feel like I’m paralyzed.
The first time this temporary paralysis hit me was on Lemtrada Round 1 Day 1. It wasn’t a good scene. I wrote about it at the time and it freaked me out so badly that I ugly cried like a champ right there in the infusion room. But it went away! I didn’t expect it to be a regular occurrence. Color me informed. It seems like I have to be in a constant state of movement, but not too much movement or I fall down. It’s a delicate balancing act. Man, I’m all about the bad puns today it seems, but I digress.
The first time this phantom paralysis hit me post-Round 1 was when I woke up one morning a few weeks ago feeling like I had to pee urgently. Not very unusual when you drink more than a gallon of water a day, but still not a pleasant way to greet the day. As my brain began to come to life and my body started to realize its urgency to urinate, my legs weren’t responding to my unspoken direction to swing over the side of my bed. Even as I swatted felines off of my burning bladder and willed my body to move with all of my might…nothing happened.
It’s obvious what I did next. I laid perfectly still with a burning bladder and freaked the fuck out. I still have some semblance of abdominal strength so I was able to lift my upper body off the bed a few inches, enough to see my unmoving lower extremities and loudly order them to wake the hell up.
Nothing happened. I imagined how much it was going to suck if I couldn’t hold my bladder long enough to get to the bathroom. I imagined how I’d have to call for help from my pee-soaked bed. I’d need help getting out of my wet pajamas, while keeping the cats away from my soiled bed. I’d need help changing the damn bed and laundering the bedding and re-making the bed. Not making it to the bathroom just seemed like the worst thing I could imagine but my legs appeared to be not connected to my actual body. I continued to lay there, borderline hyperventilating, while my bladder began to pound. Bad things were about to happen.
I lifted my upper body enough to lift one leg with my arms. It moved like a dead thing and dangled over the edge on the cusp of a massive muscle spasm in my calf but I considered that a good thing because a muscle spasm was at least a feeling. I pushed the other leg closer to the edge with my arms, then used my fancy wrought iron head board to hoist my upper body upright. My legs were dangling and spasming like mofos but I got them planted on the floor. If I peed now, I’d not soil the bed, that was my first thought upon standing. Eventually I inched one dead leg forward and then the other and little by little I lurched to the bathroom, clutching walls, furniture and the occasional cat to get me there.
Once I got myself back up off the toilet, I had a chance to reflect on how freaking scary that just was. It had to be a fluke. I got myself down the steps toward the coffee and put the whole horrible episode out of my mind. Until a few hours later when it happened again after my first hour long conference call of the day, once again when I realized I needed to pee I went to move my legs to get up from my chair and nothing happened. Now I was gonna pee on my brand new awesome giant green chair! What the motherfuck?!?!
To make this long story short, it wasn’t a fluke. This has been going on for weeks. I have to jump up every hour mostly to pee but my legs sometimes choose not to do my bidding. It can happen at any time, really.
One night it happened while laying on my couch enjoying an evening of Netflix and chill with my favorite person.
I was watching The Haunting of Hill House and it was nice to have a scary show to distract me from the shitshow that was happening in my own house. But getting up each hour to pee, I would go through the same leg paralysis routine every single time. The fear of almost peeing my pants has become my constant companion. My routine of drinking a liter of water every couple of hours is what I’m supposed to do to help my Lemtrada ravaged body recover and I am following orders on that front. My skin looks freaking amazing. My legs? Not so much. They look like any normal pair of legs, actually, but they don’t carry me up the steps to the bathroom so well. Or from room to room.
One night the episode I was watching created a weird parallel with my actual life when one of the characters on The Haunting of Hill House experienced sleep paralysis.
I could hardly believe what I was watching! Nell lay in bed, groaning through closed lips, looking desperately down on her lifeless body that refused to move while some horrible specter, the so-called bent neck lady, hovered over her or near her while she just mumbled in abject terror, her body refusing to budge. Guess who had to pee at just that moment? Guess who couldn’t move her legs to the floor? I looked up frantically hoping not to see my own bent neck lady or some other specter like the ghost of 25-year-old-bartenders from hookups past hovering over me on my couch while I willed my legs to move. Nothing. No terrifying ghostly specters so I was in better shape than Nell, but my legs still refused to budge. I eventually made it to the bathroom upstairs but it was harrowing even without the ghost.
After three weeks of this rather irritating phenomenon not letting up, I shot off a panicked email to The Great Scott to beg his wisdom. What the hell was I supposed to do with this new development in my life? Is this normal? Will it stop? I got nothing back for 24 hours. I began to panic. Every time the paralyzed leg thing happened I felt like screaming. How is a person supposed to live like this? I was desperate and I did a desperate thing. I turned to the internet.
This is hardly ever a good thing to do but I didn’t just go to any old site on the interwebs. I went to the Lemtrada support group page on Facebook and posted words I was shocked to see coming from my keyboard on an online support group page:
I’m almost two months post round one and they’ve been the worst two months yet of my MS. I can barely walk. My legs are so weak and heavy moving around is extremely difficult. I keep seeing people say “keep moving” but I literally feel like my legs are semi-paralyzed. I’m so frustrated. I’m trying so hard to be patient and not panic but this feels so bad! I’m barely able to leave my house I’m so weak and unsteady on my feet. Yeh. I’m kind of panicking. I cannot lie. I’ve yet to have any actual “good” days. Does this mean anything? Or do I just need to be patient? How can I move around when I can barely move inside my own home? Ugh. Guys this is so hard. Apologies for the panic post. I just need some moral support I think? 😕
Who even does things like that? I was ashamed of myself and immediately regretted my weakness to post in an online group to a bunch of strangers what I should be getting from my health care team. I was a sad, pathetic woman to go to such extremes
Shockingly, it was the best thing I’ve ever done. Well, that may be somewhat hyperbolic but it was a really good thing, in retrospect.
People came out of the woodwork. They told me their own stories of temporary paralysis. They told me not to panic. They explained that they had really, really bad experiences too but they got better. Some people didn’t get better for a really long time. Some people needed Lemtrada round 3 (Jesus…Round 2 has me freaked out enough, now people sometimes need a third hit?). But the horrifying mysterious pain and paralysis wasn’t permanent or unheard of. It passed. Now nothing is to say that I won’t defy the internet and remain intermittently paralyzed forever but just knowing there were people out there who had been where I am, who came out the other side and were there telling me to hang tough – call me foolish, dear BBADdies, but it made me feel so much better! It didn’t make my occasional paralysis any better but it made me feel less panicky. It made me calm down ever so little but enough to keep myself from freaking out every morning when I may or may not be able to get myself out of bed.
Two days after I sent the email to TGS, I got a reply from him (I’m writing about that in another post…stay tuned) but I ALSO got reply from Evil Nurse Carol. When I saw her name in the message center on My Chart I steeled myself to be pissed off and opened her message, fingers ready to fire off a reply dripping with righteous indignation and sarcasm. Here’s what she said:
RE: Visit Follow-Up Question
Happy New Year to
you too! Don’t get discouraged with not feeling well. This is a VERY strong
medication and most people do not feel well for 3-4 months after the first
infusion. It is like getting chemotherapy for a malignancy.
Hang in there kid.
Wait, what?
We’ve progressed to the point in our relationship where we have pet names for each other now? I mean, I’ve always had one for her but she doesn’t know that. She called me “kid!” It almost sounded, dare I say it, affectionate? What am I supposed to do now? She can’t be Evil Nurse Carol when she tells me to “hang in there, kid!” She is teetering dangerously close to a nickname evolution. Do I have to call her Only Occasionally Evil Nurse Carol, now? It doesn’t quite roll off the tongue.
It threw me off, reader, I cannot lie. I’m still not quite over it. But hang in there, I did, and I’m still hanging in there. Between the help of the benevolent Internet support group comments, the actual response from TGS himself AND kind words from OOENC (see? I just doesn’t work as well), I felt myself reassured that while this might well be the longest two years of my damn life – on top of the longest three years of my life I’ve just experienced since my MSversary on December 1 – there might be some kind of very dim light at the end of this long dark frightening tunnel. I will get through this. Somehow.
It’s only a matter of time before ENC is back to her snippy ways. And maybe it’s only a matter of time, too, until my occasional paralysis is a thing of the past. A bad dream. A haunting that I don’t like to think about but one that did eventually move on. Maybe.
Betsy Riley
January 5, 2019 9:32 pmGlad you’ve found some people with experience specific to your situation.
bethnigro0212@gmail.com
January 5, 2019 10:13 pmIt helped so much more than I ever could have imagined. 🙂
Anneen
January 5, 2019 9:43 pmCan you get a portable commode for the floor that doesn’t have a bathroom? So you don’t have to try climb stairs while trying not to pee?
Support groups with people on the same drug can be wonderful! Stick with them!
bethnigro0212@gmail.com
January 5, 2019 10:15 pmGreat advice…I’ve been trying to avoid the portable potty thing but if this keeps up for much longer, I’ll definitely look into it. I tell myself that step climbing once an hour is exercise I need. But it would be much easier if my legs would attempt to lift themselves. 😉
Anneen
January 5, 2019 10:41 pmBut if you don’t make it in time, then you’ll have a ton of work to do! Ugh
I tried to post on your last blog post but I guess I messed it up. I’m still JCV negative….so Tysabri forever. 🙄
But after hearing your experience with Ocrevus, I’m not too sad to be stuck with Tysabri a little longer.
bethnigro0212@gmail.com
January 5, 2019 10:42 pmI know people who swear by Tysabri. I was super sad when it didn’t work for me. I’m glad it does the job for you!! 👍🏻
Anneen
January 5, 2019 10:45 pmIt’s not working as good as it used to but my neuro says I’ve had MS for a long time. I think she’s saying I’m old. LoL!!
I need to hit .9 on JCV bloodwork to switch. It’s like playing lotto.
bethnigro0212@gmail.com
January 5, 2019 11:59 pmI’m also pretty sick of my neuro telling me how old I am. I mean…seriously. 🙄
Betsy
January 5, 2019 10:16 pmI love reading everything that you write. You write everything that I go through everyday after HSCT but I don’t know how to convey. Wishing you all the best. This MFer is real.
bethnigro0212@gmail.com
January 5, 2019 10:21 pmThat is so nice of you to say and yeh…this sucks. 😉 Where are you located that HSCT is an option? I’d love to hear more about your experience with it. I was told Lemtrada was kind of like HSCT but without the stem cells. Kind of. I hope you are getting better!
Joanne
January 6, 2019 12:47 amHappy New Year. Hang in there. You have come this far and I expect days will get better as time passes which at this moment is forever. If you do not want the commode you could look into wearing the underwear with liners for incontinence. Not the sexiest undies but would relieve some of the anxiety of an accident. Anything to make it easier and less stress for you. It was a good idea to reach out to support group. They can give valuable pointers and provide support that only someone in your shoes has lived through. Wishing you better days to come. You are special person
bethnigro0212@gmail.com
January 6, 2019 12:01 pmThanks Joanne. That is really kind of you to say. I truly appreciate your good wishes! 💕
erinhasms
January 6, 2019 12:03 pmMaybe ENC made a new year’s resolution to be only occasionally evil—let’s hope she sticks to it! I’m part of that group you mentioned, too, because I often feel like I’m missing out when it comes to Lemtrada. The potential for remission–actual remission–is so attractive. But that group and blogs like yours help me understand what the experience is truly like for people, the many challenges it brings, to say nothing of the sobering list of side effects. My insurance company won’t even cover the Ocrevus I’m receiving now, so Lemtrada is likely out of reach anyway. But still, I keep coming back to the possibility of remission. I hope that’s exactly where it takes you, and soon. Sending so many good thoughts your way.
bethnigro0212@gmail.com
January 6, 2019 12:14 pmHa! Let’s hope she really did make such a resolution. I’m skeptical. Lol. Lemtrada was a giant step. Call it my desperate attempt to get to some level of new normal. I can’t question my decision to do it. It’s way too late for that. But those support groups are quite simply invaluable to me. This is so scary! And nobody really prepares you for what happens between infusion weeks. They should do a better job. I hope your treatment decision resolves itself soon. My insurance rejected me too. I had to have TGS appeal. 👍🏻
Sandra
January 6, 2019 4:26 pmThat’s a lot of water. Excess water consumption can cause as many problems as too little: hyponatremia has become a huge problem with athletes. There was a great, “Adam Ruins Everything” about this. I know that an overfull bladder (and impacted bowels) can cause severe spasticity with MS. I wonder if this is part of the issue. I’ve never taken Lemtrada, but the actual drug is probably mostly out of your system by now-the half-life is about 2 weeks. Also, the sheer stress of so many bathroom trips on wonky legs has got to be awful. I know it’s excruciatingly hard, but please hand in there, Bethy.
bethnigro0212@gmail.com
January 6, 2019 7:26 pmI think what’s happening is that my body is regenerating the cells that were destroyed. From what I’ve heard from other patients and doctors, the recovery can be brutal. But I’m trying my best to be patient. It’s not my best quality. 😉