The New Normal (Old draft I didn’t post from last summer)

Had a wonderful evening, spending time with family. Tuning into life instead of my MS and symptoms helps them feel less present and less pervasive. The problem with MS is symptoms are new or in flux. They don’t always feel the same. For me I have a baseline numbness that blends into the background. If something feels the same your attention isn’t always brought to it. It’s not normal, but it becomes the new normal. You can forget about it and go about your day.

However this same baseline numbness isn’t a steady sensation. It is constantly in flux. Picture the beginning of a musical arrangement. The notes are steady, a baseline rhythm, the strum of violins producing a steady rhythm. That’s not how it stays- add in some notes, here’s an oboe, a basson, or a viola, drums, cello, trumpets, trombone, there’s a tuba. Constant flux. So here’s that baseline hum of numbness, add in some extra tingling, pin pricking sensations, now some spasticity- that’s muscle tension, a flexing sensation that doesn’t release. Now, that sensation takes on a crescendo- it increases and moves up the legs and arms. Now there’s a vibrating sensation, like your phone on vibrate in your pocket but it is on your big toe. Buzz, buzzz……..bzzzzzzzzxxZZZzz!$&@

This isn’t new; it has all happened before, but maybe it’s been a few days. So there is a newness to it and the mind is drawn to it. It interrupts your day. It interrupts your normal routine. If there is nothing to take your mind off it, your mind natural goes to it, and it intensifies. Even as I write this blog post I am starting to feel all those sensations. Guess my mind wants to make sure I give a proper description. These weird sensations are the new normal for me now. Now the numbness is in my jaw, coming around my eyes. It increases and spreads. If I pay attention I can even feel it in my shoulders.

This is just one symptom that I’m describing. Add in bladder problems, MS Hug, cognitive problems, falls…. the list goes on. Writing this makes me wonder how do I ever get anything done? How do I ever accomplish a single thing? How do I be a mom to my kids? How am I writing this?

The trick I have found is that some of these symptoms- if I can trick my brain and take it away from these symptoms- pay attention to other things and not the weirdness that is going on in my body, I can function. However, if I let them take over. If I give my MS all my attention and fixation- they get worse, they increase, and functioning is nearly impossible.

Some of my body is malfuctioning. Some of my nerve signals are messed up. Some of the places in my brain and spinal cord are scarred and the signals don’t travel through the way they should. But there are other places that are healthy. There lots of regions that aren’t scared. They can take over and do the work. They can help me function.

When I was 22 I had a big relapse that affected my gait. I awoke walking like a drunk person, holding on to the walls, just to get to the bathroom. One week later my back buckled forward in a spasm and they kept going. I had those intermittent spasms for the next five or six years. These spasms often happened when I was in bed, when I was trying to sleep, when I was stressed, or when I was trying to meditate. They didn’t often happen when I was being active, but when my body was at rest. However, overdoing it would bring on the spasms, because I would be unable to walk or keep going and I would have to lay down, then spasm. Concentrating on the spasms always made them worse. But it was almost impossible not to concentrate on them because they were violent. My whole back would buckle, they were convulsive, they were seizure like but I was aware and awake. Once I had them in bed at my Grandma’s house and they were awful. It was hard to call out for help when they happened, both because I didn’t want my family to see me going through that, and I couldn’t initiate speech. This time I don’t know if I was able to call out or my Grandmother happened upon me, but I remember my uncle coming in and asking if I wanted to be taken to the hospital. I agreed because they scared me so very badly, they were painful, and I just wanted it to stop. Sitting in the waiting room of the ER, we waited and waited. I was sitting in one of those wheelchairs that had a soft back and soft seat, where you kinda hang in it- with your legs up on the leg supports. Those wheelchairs are so gosh dang uncomfortable. I was having mild, repetitive spasms. My wonderful cousin Rebecca, we call her Sissy, started massaging my shoulders. The spasms eased and after a few minutes of massage from my wonderful cousin’s hands- they went away completely. I asked if we could just go home, because I didn’t really want to be in the ER and I didn’t really believe that there was anything more that could be done for me there, than what Sissy had already done for me. Massage and human connection brought me out of those painful spasms. I had an answer.

It is a difficult balance to keep. There is a fear of taking on new things. There is a fear of not being able to handle them. But to take on new things is what helps our brains grow and establish new connections. This is a disease of stagnation and worsening, or at least that is how it was previously marketed. Like any bully- we have to not give it our attention. We need our other occupations to keep us sane. But we also need our connections with each other. This post may make it to the eyes of someone else experiencing horrible spasms. If anyone has, just let me know in the comments. On here, on Instagram, or Twitter. One of my goals on this blog is to share a timeline of my symptoms- what I did, what worked. I didn’t get better from steroids, I didn’t even try them, wasn’t offered. It took years and a lot of different therapies to find things that worked. So please, if anything speaks to you let me know and we can talk about it.

The way this disease is being marketed, through digital marketing and social media has changed. This is a major victory for us the patients and it is a major victory for the pharmaceutical companies because they are learning and interested in learning how to help us get better. We are changing the conversation, we are showing our capabilities. Keep persisting! Never give up! Your life is too important! 🧡

What it feels like to have MS

What follows is my answer to the question above that I found on Quora

The feelings of multiple sclerosis are described by the name of the disease. Just as there are multiple scars there are numerous feelings those create. This moment as I’m sitting here typing this, if I tune into my body I start to feel the numb sensations around the back of my neck, the numbness reaches around. I’m reminded of the imagery of a hand because I can feel it’s fingers and the tingles lightly brush my lips and the skin around my mouth, my cheek. Going further down I notice that thankfully my chest and ribs are calm today. No MS hug, a symptom that often squeezes my ribs and causes pains in the webbing over the muscles of my chest. Scanning down the arms the numbness increases, or rather the feeling decreases, rounding the elbow, sandy feelings in my hands and fingertips as I press the letters on the screen.
Further down- my spasticity in my legs has really improved the last couple of weeks so my leg muscles are relaxed. When they are spastic it feels like I’m flexing my muscles to do a squat, or another kind of exercise. However, I can’t release. The tension remains. Sometimes it causes spasms. Sometimes it’s painful, like a Charlie horse. Sometimes it’s the left thigh, sometimes the right, calves, sometimes it’s all the muscles together. Oh I forgot the numb tingles, the sandy feelings start a little above the knee, and sandier and sandier as I progress to the toes. I know how much it feels like sand because when I go to the ocean and wriggle my toes into the warm sand- all I feel is sand outside my body. I don’t notice the inner sand because the contact against those real grains signal to my body- “this is normal. You really are in sand.”

That’s a picture of right now. But that doesn’t cover eye pain, shaky, blurring vision, slowed gait and the feeling that your body is made of quickening concrete. Your body getting so tired that it says, “you pushed me too far, so I’m going to shut down. I need to go into power save mode and you just lay there on the floor till I reboot.” Maybe there enough energy to crawl to the sofa. Maybe not. The feeling that you are lost in an inner fog. The feeling when you go out with friends and all the sudden the multiple conversations get to be too much and you feel your self and identity retreat, inside the back of your inner cave, looking out at the shadows on the wall that are your friends. The awkwardness to have to be explain this; to say goodbye unexpectedly and have your support person help you get home. Or maybe you sit there for a while, hiding inside yourself, smile and nod. There no conversations, just inaudible noise you can’t make sense of.
Now there is the feelings of my arms fatiguing. I typed too much. My eyes are tired and long to close. Goodnight. I’m going to dream of a body free of these things. Tomorrow I will wake up- to enjoy the life I have, filtered through these many feelings.

Tomorrow's Remyelination Infusion of Elezanumab

Tomorrow I am going in for my seventh infusion in the clinical trial of the remyelination drug elezanumab. For the first three infusions after I came home I was really wiped out. I rested in bed for two days as much as possible despite having two very active small children. I was exhausted.

It’s a lot

Infusion number four presented a different feeling. I was no longer wiped out; I felt semi normal, for me. I started noticing some small changes.

  • I feel like my cog fog is much less than it was. My thinking seems a bit clearer, less foggy. It’s not perfect, but it feels like there has been a change.
  • I can do the tandem walk- the heel to toe walk is one of the tests given during the clinical trial. In fifteen years I have been unable to do this walk. It felt like the hip flexor muslce just wasn’t there. I watched a video by Dr. Aaron Boster’s video on decoding the balance exam in which he explains what the neurologist is evaluating when giving tests like the tandem walk. He notes that the tandem walk evaluates balance, which is controlled by the cerebellum. I discussed this with my physical therapist at my appointment yesterday. I asked her opinion. She said whether there was remyelnation happening in the cerebellum or not, she couldn’t speak to. However her and I have been working on strengthening the hip flexor muscle and strengthening the muscles can lead to better balance. This is the idea of neuroplasticity: If you are strengthening the pathways to the muscles you can relearn how to balance using them.
  • My walking ability seems to have improved somewhat. I have been able to take more breaks from my cane. Having said this, there are still a lot of ups and downs.

One of the downs being, a episode of increased heart rate while cooking lunch. When I started monitoring my heartbeat with my watch while trying to cook two things at once my heart rate had jumped to 118. I sat down and my heart rate continued to climb up to 140 beats per minute. I sat down for a few minutes but my preschooler needed me and when I got up to help him in the shower my legs went out from under me and I fell back. I caught myself with my arms, trying to prop myself up; I just got so tired. I called for my husband from the bathroom floor and he told me he loved me, and that I’m surrounded by people who love me. Later he told me I was going in and out of consciousness. I felt like I was being pulled into that cave inside myself I have encountered before. He got me resting in bed, feet propped up, lemon water. Then he gave me something to eat and I recovered.

I emailed my neurologist’s assistant as we continued to the beach as planned. You can’t promise your kids the beach and back out last minute. While looking at the waves I was thankful I was at the beach and not the emergency room. We had been questioning if we should go there instead. I don’t know whether this was wise, but I was lucky. I have had heart flutters and palpitations for ten years. It’s a strange phenomena in my body that had been looked into and excused. Now it’s back.

On Friday I went to my PCP. He is a DO who specializes in treating patients with chronic conditions. I detailed the experience for him. He gave me an ekg, and tested my blood pressure and heart rate while sitting, standing, and laying down. He ordered a heart rate monitor that I will be wearing for a month and I also need to get an ultrasound done of my heart.

Is it just me or does it feel like we should get a hall pass from all other chronic conditions if we are already dealing with MS? Unfortunately our bodies don’t work like that. I have low grade asthma, and I only need my inhaler when I am having MS Hug. I have Hashimoto’s thyroid disease. Now its time to play the guessing game of what is going on with my heart. I’m tired of this Guess that Chronic Disease Game Show. Can I pull out as a contestant? Or better yet can we just cancel this show all together? The prizes suck!

There are good things to look forward too. While at the doctor I finished my submission for the Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis. I will go into this in the next blog. So I was focused on my heart, and this project. Hint- it’s an idea for a better and more portable cane. Then after I pressed submit I found they extended the deadline until Jan 17th. However, the good news is if you have an Idea you can still submit. Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis.

Tomorrow I’ll be seeing the neurologist conducting the evaluations for the clinical trial. He’s nice and I have a list of questions for him.

  • Question One: How are you measuring remyelination?
  • Question Two: Can our MRIs show remyelination taking place or are they a precaution to make sure there is no new disease activity?
  • Question Three: What is my EDSS score and what was it when I started the trial?
  • Can I take a peak at that tablet and see my scores for all the tests? 😂

So I’ll keep you updated and let you know what I find out tomorrow. I also have promised you another blog telling you what my submission is for the Novartis Innovation Prize.

Links you may want to check out:

MS specialist tries four MS drugs just to experience the side effects first hand.

This morning I found Dr. Brandon Beaber, a neurologist and MS Specialist in Downey, California for Kaiser Permeante. The video is entertaining and it makes me feel good inside to know that he cares enough about the MS experience to risk discomfort and side effects. It’s refreshing to see more neurologists and MS specialists interested in shared experience with patients and the MS Community. Dr. Brandon Beaber, I will be following you! 🧡💯

MS Specialist Dr. Brandon Beaber tried four MS Medications to experience side effects

He also wrote a book sharing experiences of five patients with MS and their inspiring journeys.

Resilience in MS

Going Forward: My Participation in the Clinical Trial for the Remylenation Medication Elezanumab

Hi, my name is Elizabeth, aka msGuidedbits. I have had relapsing/remitting multiple sclerosis for nearly 16 years. It’s been a 15 year struggle; out of two disabling relapses, through fatigue, and managing encroaching numbness. I used to pretty much keep my MS under wraps. I would largely avoid social interactions because I was afraid of people seeing my symptoms. After a relapse last year left me using my cane again, I was heartened by Selma Blair’s courage to come out with her MS diagnosis. I decided to come out of the shadows and start sharing. I also chose to start on Ocrevus. Ocrevus helped me stop the downward spiral of my last relapse. Then I raised my hand to participate in a clinical trial for the remyelination drug elezanumab. It’s a new hopeful regenerative pharmaceutical in the brave new world of Restorative MS Medication.

I am going for my fifth infusion tomorrow. I have been getting messages from MS warriors expressing interest in my progress on the trial and wishing me luck, even thanking me. Thank you all so much! Your support makes me feel hopeful on those hard days. There are still those days I do not feel well. There has been a relapse scare, a month of vertigo and MS Hug. It made me question whether or not to remain in the trial. Before I got into this, I did some research. Here’s a little background on the information that led me to participate in the trial.

The information below is from the American Academy of Neurology.  It details the phase 1, double- placebo-controlled trial of elezanumab for safety.  It discusses the way the medication is thought to neutralize to some extent a molecule that prevents the regeneration of myelin.  I’m not a medical professional- listed here is the material from the article:

Elezanumab is a fully humanized monocolonial antibody directed against repulsive guidance molecule A (RGMa). Elezanumab is a fully humanized monoclonal antibody .  Studies in patients with multiple sclerosis (MS) demonstrate RGMa upregulation, which inhibits axonal growth and myelination, oligodendroglial regeneration and functional recovery after trauma or inflammation. 

Elezanumab treatment promoted axon regeneration, neuroprotection, remyelination, and immune modulation in several MS-relevant preclinical models. Elezanumab was previously well-tolerated as a single dose to healthy volunteers.

Design/Methods: In this phase 1, double-blind, placebo-controlled, randomized, escalating multiple-dose 29-week study, patients were randomized into 3 treatment groups (150 mg, 600 mg, and 1800 mg elezanumab) and 1 placebo group. Of the 20 patients enrolled, 18 had relapsing-remitting MS and 2 had secondary progressive MS. Elezanumab doses were given intravenously every 4 weeks for a total of 4 doses, with a loading dose of double the maintenance dose given on Day 1. Assessments included adverse events (AEs), cerebral spinal fluid (CSF) and plasma biomarker analysis, and Expanded Disability Status Score (EDSS). Subsequently, magnetic resonance imaging and serum pharmacokinetics data will be reported.

Adam Ziemann, Matthew Rosebraugh, Bruce Barger, Bruce Cree

Going over this information I noticed something key that I missed.  There was only a total of four doses given in phase 1. That means I have already received the fourth dose.  This dose, number five, is completely uncharted territory. Though there was no noticeable improvement in patients in trial 1, they do a fifth infusion.  Until my fourth dose I actually felt worse after the dose. Then something changed. This makes me excited for dose number five. The outcome is unwritten and I am going to be part of finding what that outcome is.  I have eight more infusions to go. Will elezanumab allow for axonal regrowth, remyelination, olidendricite regeneration, and functional recovery?!? Basically, will my symptoms improve? Will my numbness lessen? Will it get easier to turn my neck? Will I continue to notice cognitive improvement?  

I realized, being part of this trial, this is our chance.  If we follow the MS research, if we become participants in it, the research won’t be being done behind a curtain but before our eyes.  In my case, the research is being done within my body. Ten years ago some people with MS tended to turned to and put trust in anecdotal accounts of improvement.  I was one of them. I felt the pharmaseutical industry had failed me. I have changed my mind because I found a medication that actually helped me. If a drug really works we can have both, anecdotal experiences from real patients and data backed up by clinical trials.  It’s an exciting time in MS research and it’s a pivotal time in MS culture and awareness. The movement is growing and pharmaceutical companies are working with patients to move towards a cure. Maybe we can do this together.  

I would really appreciate your thoughts as I go into this.  Now that the fifth infusion is tomorrow, I’m starting to feel the butterflies in my stomach.  I’m not out of the woods yet. Safety issues may still occur. However the hope is stronger. That this might work for me, and keep getting studied and go on to help everyone with MS.  So if your religious say a little prayer for all of us. If your not religious, thoughts are also welcome. Thank you so much for going on this journey with me. I’m going to give an update on Thursday on Damian Washington’s Vlog, No Stress MS, with a live interview.  Please join us!

Clinical Trial-  Acceptance to Infusion #3

Hooked up

I apologize that I haven’t given you guys an update via the blog yet.  Drum roll….. I was accepted to the trial and I have received my first two infusions.   I’ll give you a little break down of what goes on during these appointments. 

My baseline 25 step test, 9 hole peg test, clinical evaluations were established. This is the jumping off point. Hopefully these scores will improve as the trial goes on. I see the doctor ever three appointments, and go through longer evaluations, including your standard neuro poking and prodding. The doctor is nice though. I was doing the evaluation where you touch the neuro’s finger. He only asked me to touch the finger but out of habit, I touched my nose after touching his finger and I had to laugh. After 15 years of neurologist evaluations, my body knows what to do automatically through these tests.

Bio Stamp Monitor

I was monitored for the first 7 days after my first infusion with sensors to monitor electrical signals within my body. I affixed three sensors, in the morning on my chest- over my heart, on the outside of my left thigh, and the outside of my left calf. As the seven days went on I developed a little bit of a worrisome reaction to glue or whatever that makes these things stick. I switched to my other leg, though I was not supposed to, for a day or two because I was worried the marks would be permanent. Luckily I do not have to wear them after every infusion and the marks did fade.

I received the infusion. I am either getting the high dose of the medication elezanumab, a low dose, or no dose at all; in other words a placebo of saline. Even on the bag it says elezanumab or placebo.

This is a double blind trial, so for the duration of the trial neither the doctors or I will know which of these three I am receiving. This is why I think I am receiving the medication.

  1. It feels like something besides just saline is flowing into my veins. I am already on the DMT Ocrevus. I receive saline before I feel the medication and I can feel the difference between the two. However this is still conjecture.
  2. I am wiped out for two days after the infusion. I am just really, really tired.
  3. My husband notices a difference over those two days. He gets worried about me because of the initial weakness.

So if this is making me feel like crap after I receive the medication, why am I still continuing this trial?  I am in this for the long haul. My body has been breaking down my myelin coating for 15 years. It’s going to take some time to rebuild.  I don’t know how much time, but for now, while there isn’t anything too alarming, I’m going to keep going.  

After the first infusion I got hot. My husband said I was a bit feverish during the nightafter my my first infusion, and during the day I had a temperature of 99 degrees, whereas I usually run right around 98.

They give me snacks, juice, and a packaged grocery store style salad. I am thinking I should pack something for that will fuel my body a little better. The first two infusions I was tempted by a nut, cheese, and fruit pack. I want to make sure not to give into the temptation tomorrow because I want to see if the symptoms I am having are a result of the infusion, or just that I ate some cheese. (I am on The Wahls Protocol diet and cheese and dairy is off the diet).

This morning I have my third infusion. I am nervous. I have already been feeling tired and having more spasticity, worse MS Hug, and just overall not feeling well. So I’m not looking forward to possibly feeling worse over the next couple of days. At least it is a short appointment so I can come home and rest a little before the kids get back from school.

There is hope in this process. I want to get some of my abilities back I lost. Most of all I want this numbness to go away in my legs and arms, hands and feet. It has made it so much harder, being able to feel less. My numbness is deep, like a muscular numbness more than a surface numbness. After 10 months of this numbness my muscles have weakened and I’m trying to get back what I have lost through physical therapy. If I could have just one result from this trial, it would be for this numbness to lessen or go away entirely.

Well, my car has arrived at the infusion center. I was transported in luxury in a town car. The perks of a clinical trial. I’ll let you know how it goes. 😘🤞🏼🙏🏼🧡