Uncategorized – A Life with multiple sclerosis

July 19, 2022July 19, 2022

Post HSCT – Almost Month 5 Symptoms Update

Got Spasticity?

This is the post where I document, on mostly a monthly basis, the experience/progress/reality of my symptoms; tracking how things are moving. I resisted writing this post because I find myself in the long tunnel of recovery. This is the place where things get worse before they (hopefully) get better. I would like to able to report linear progress and tangible outcomes. That’s not how this works

I knew going into treatment that the first year was likely going to be rough. I knew that many people encountered significant increased spasticity. I knew the beast was coming. This beast doesn’t move through quickly. It doesn’t sit down and rest quietly by the hearth. This beast is vigilant, relentless, and resistant, impervious to the slings and arrows of my outrageous fortune. So, I do the best I can. I search out tools and tricks to settle the beast down, to distract it, to make it sleepy, if even momentarily.

My sorceress bag includes gabapentin, baclofen, tizanidine, pot, physical therapy, acupuncture, the swimming pool, zero gravity bed positions, pure wave massagers, tiger tail rollers, therapeutic massage, mindfulness meditation, magnesium glycinate, pelvic floor therapy, vibration plates, lion’s mane mushrooms, Valium, Tramadol, sheer force of will.

Medical Experimentation:

Over the last two weeks I have started gabapentin and titrated up to a current dose of 900 mg three times per day. I started at 300 mg three times a day and thought, “hmmm, I feel something. A tickle of relief.” But it wasn’t enough, and I slowly increased to 600 mg three times a day. At first it felt miraculous. It wasn’t perfect, but I could move more fluidly, more freely, I could feel my legs – they belonged to me. But it was fleeting and inconsistent. I read research that reported the sweet spot dosage of 900 mg three times a day. So that’s where I am now. If I want to, I can go as high as 3600 mg (1200mg 3x or 900mg 4x) per day. I will hang at this dose for a while to see if it settles in and evens out. It seems to not work very well in the morning, only coming online mid to early afternoon. I find I feel best in the evening before bed and the worst in the morning getting out of bed.

Research also shows that it can take up to four weeks for the full impact of the medication to take effect, so I will be patient. If I find it gives me relief more often than not, I will begin to wean off the baclofen, carefully this time, and see if I need to be on both.

I am also doing a more scientific, patient way the use of the different RSO (cannibis oil) strains I have found to be valuable. Here is a little of what I’ve learned:

Milky Way RSO: seems to give some relief but also makes me weirdly high, uncomfortably so. It is not a good high, but a paranoid disconnected one. I don’t understand why because it has very little THC. I want this one to work for me because it has a high CBG content and that is supposed to positively impact many different areas. So far, I kinda hate it but I haven’t quite given up yet.

Sour tsunami RSO: this one does not make me feel high until I take a very high dose. Its THC content is the same as Milky Way so I do not understand this. It also doesn’t seem to have the same intensity of impact in terms of relaxation. I am trying to pay attention to it more subtly by doing it throughout the day. The jury is out.

Critical Mass RSO: this one is magic. It absolutely relaxes my body. But it can also make me quite high. It is a lovely, floating, tingly, soak into it sort of high. A lie down with your eyes closed feeling every tingle of the body type of high. It is very helpful with sleep, but too drowsy making for daytime use.

The other thing I’m aware of in writing this post is how difficult it is to express the internal feeling of the body in a way others can understand. Each walking video I provide from month to month likely looks exactly like the other to an observer. But the feelings in my legs, in my knees, in my hips can be wildly different, hour to hour, day to day. My walking is hard right now. My spasticity is through the roof. The pain in my hips and sacrum are constant. But you can’t see that in a video, and I try hard not to dwell on them.

This is one way recovery can look almost five months in. This is the dark part of the heroine’s journey, the place of challenge and fortitude, slaying dragons and monsters, holding faith, holding on, holding hope.

In summary, my spasticity is very high. It is known and expected. It is likely to quiet down, though it can take time – months to years, and for some never. So, I’m living in that belief that I am of the many who just have need to hold tight to the wheel through the big waves to the restful pool at the end. The brain is a powerful thing and can write the story. I intend to know that I did my best.

Symptoms:

Walking and legs: this is pretty much covered in the writing above. High spasticity, hip pain, lots of experimentation.

Arm function: ugh. All my energy and attention has been focused on what’s going on in my legs and I really don’t have bandwidth to put the spotlight here.

Bladder: I feel like this is getting better. I can go longer between trips to the bathroom. I still feel urgency and some leakage. I see a pelvic floor therapist this week and I’m excited about that. More to come.

Bowel: Mostly continues to be normal. For some reason I don’t understand I’ve had significant bloating last couple of weeks.

NEW SYMPTOM – Hot Flashes: I have been postmenopausal since 2017. I had minimal hot flashes throughout the menopausal process. Lucky me, they are back! It is a known thing that the chemotherapy agent cyclophosphamide impacts hormones and can put women into menopause early. Given that I was already postmenopausal, I didn’t think this would impact me. Well, it did. I’m having more hot flashes than I was during menopause. Fun.

Hair: Hair growth is to the point I no longer look like a cancer survivor. I am fast approaching the decision point of whether to keep at it this length or grow it out. I’ll leave you with that cliffhanger!

Hair front view

Hair side view

June 9, 2022

Post HSCT – Month 3 (3.5) Symptoms Update

Calla Lilly's

It has taken me way too long to sit down and write this update. In reality I am more like 3 ½ months post treatment. This last month has been incredibly challenging dealing with spasticity and pain. As was true with last month’s symptoms post, if I had written this a few days ago, I would’ve sounded hopeless and morose. The last few days have found more balance and comfort.

This first year post treatment is frequently referred to as a roller coaster but I’m not sure that is quite the right term. Roller coasters are fun and exciting they have ups and downs but ultimately, they are exhilarating. I feel it is closer to a hero’s journey full of beasts to be fought, lessons to be learned, loves to be found and lost, long stretches of solitude, moments of despair and hopelessness, moments of beauty and insight, and ultimately the attainment of a goal, though that goal can be elusive and ever-changing.

The upside of hitting this three-month mark is my immune system is more robust giving me the ability to engage in life more. My blood labs reflect that my baseline immune system has for the most part normalized. I still have somewhat anemic lymphocytes (B cells and T cells) and that will likely be the case for a while still. This means that if I get a cut or infection my first line of defense, my innate immune system, will kick in as normal and likely be effective. If I get exposed to a virus, it won’t be life-threatening, but my response will likely be sluggish, and I may get it more intensely than I otherwise would. Also getting a virus of any kind will suck because it would flare up my existing MS symptoms intensely. I can now go to the grocery store, to physical therapy, to small group gatherings where no one is actively sick, to see the new Top Gun movie wearing a mask, to begin to normalize life.

I went to Kira’s college graduation at the end of May which involved flying and being in crowds. I did so carefully, wearing a mask everywhere, and taking a lot of downtime. It meant a lot for me to be able to be there and partly why I timed my treatment for February.

Kira Graduation

I continue to do daily physical therapy and I can get out on my trike a lot more now that the weather is marginally better.

Mobility/Walking/Legs

You may recall that I had been weaning myself off baclofen, a medication prescribed to reduce spasticity, to see if it was doing anything for me and to know if it was worth tolerating the side effects. Well, turns out it is. I had weaned down to 5 mg in the morning and 5 mg at night prior to getting on the airplane to Colorado. By the time I arrived I was experiencing intense spasticity, paroxysmal spasms, and pain. Nothing I tried could alleviate the discomfort. I had to rest that first afternoon and evening and missed Kira’s Phi Beta Kappa induction. The next day, Saturday, I had to miss her department graduation celebration as well as the school’s baccalaureate. By that evening I was so uncomfortable we took a trip to the emergency room where they provided me Valium and gave me baclofen to increase my dose (I stupidly hadn’t brought extra). Thankfully that worked and I was able to attend the graduation itself on Sunday morning and all the celebratory events the rest of the day.

Lesson learned. I am now being a better patient and also more “patient”. I’m slowing down my experimentation so I can learn more clearly what everything is doing. My physiatrist has me taking 20 mg of baclofen in the morning, postponing my midday baclofen of 20 mg to 2 or 3 PM to stave off evening spasms, and 10 mg at night. She added 5 mg of Valium at night to help with sleep. I am to try that for a week to see if it makes a difference. I hadn’t noticed any benefit for the first two days and was ready to stop but received good counsel to give it the full week before deciding. Patience, patience, patience. Things are definitely better, though there is room for improvement for sure. The next step will be to add gabapentin.

I am also almost weaned off tramadol at night. The goal there was to decrease hip pain for sleep, but I have found that “wonder rub” is equally, if not more, effective. I have also found that if I get out on my trike it limbers up my spastic hip and adductors as well as increases energy/decreases fatigue. If only it would stop raining.

Finally, I have taken to wearing my AFO full-time and it makes an important difference in my walking gait. Here is this month’s walking video:

I wanted to give the product shout out to Kizik shoes for any fellow MS followers. They are “No hands” on and off with an “uncrushable” heel, lightweight, very comfortable and stable base, and not horribly “orthopedic” looking.

Arm/Hand/Writing

I have not done a thing here over the last month. No arm, wrist, or hand exercises, no handwriting practice. I seem to be very resistant to this work. My focus has been entirely on dealing with spasticity and pain in my legs and hips. I have continued to play ukulele, so that’s something. This month’s hand/arm video:

Fatigue/Energy

After having gone down to 10 mg of baclofen, I went back up to 50 mg per day and then my physiatrist recommended I try the top dose of 80 mg per day. After having done that high dose for a couple of days my fatigue crushed me. It took everything I had to not sleep all day and I felt emotionally miserable and there was no notable difference/benefit with my spasticity. I went back down to the 50 mg per day and the fatigue has resolved. I feel back to my fatigue free self!

Bladder

I met with a urologist, and she was able to confirm that indeed I am no longer having urinary retention – yay! She had me do a very specific tracking protocol for three days and determines that I have “overactive bladder (OAB)”, but not a very severe case. She prescribed Phenazopyridine, the medication you get to relieve UTI symptoms that turns your pee orange and then gave me instructions on doing “bladder training”. This is where you employ a “urination schedule” and urinate at set times, such as once every hour, whether you feel the need or not. You then slowly extend that amount of time until you can hold your urine for around three or four hours which is a more normal pattern. I am currently doing an every two-hour interval. Also, a lot of kegels and “urge suppression”. If this doesn’t succeed, I will see a pelvic floor therapist and/or try different medication. I’m feeling optimistic this will be effective.

Bladder Training Sheet

Bowel Function

Going swimmingly, normal, no issues.

Hair Growth

Look Ma, new hair!

New Hair Center

New Hair profile 1

New Hair profile 2

I am really enjoying this hair length and may keep it pretty short for a long time. I also got cool new glasses. I am curious to see what it looks like when it grows back. Will it be super curly? Will it be straight? Chemotherapy has an interesting and unpredictable impact on hair texture. I had very curly hair going into this, what will it be now? That’s one reason to let it grow longer at first. We shall see…

May 19, 2022

Post HSCT – Month 3 Musings

Tulips

Theme of The Month: Spasticity/Spasm Management

Saturday is three months since returning from Mexico. My experience of time passing is both slow and sudden. I cannot believe it has already been three months and at the same time every day feels long and drawn out. It reminds me of how I felt the first year with a newborn.

I have been putting off writing this post because I’ve been struggling a lot in my body. Depending on when I sit down to write, I seem to be either morose and hopeless or excited and hopeful. Today feels more balanced leaning a little towards excited and hopeful. I have had days that feel so hard it breaks me and I sob. I’ve had days where I’ve written in my journal, “this was a fucking good day!” Big swings. This is a boot camp training in Buddhist nonattachment.

I am writing mostly to document the HSCT process and to be able to see changes over time. For that to be useful, I need to be honest and objective about my experience when it is my nature to write an optimistic, future forward, triumphant version of my experience. Well, the last couple of weeks have sucked. My spasticity is still rough. Often, I have periods of spasms so intense and painful that I can’t think of or do anything else.

Typically, in the morning, my right leg wants to go into “extensor spasms” where my leg muscles all push simultaneously to extended/straighten my leg as far as it possibly can and with immense force. This hurts. It makes muscle fibers burn and I can’t get it to stop. On the flipside, in the evening, my right leg goes into “flexor spasms” where the entire leg from hip, to knee, to ankle) flex upward suddenly and fiercely, like regimented marching, over and over. This also hurts and makes it next to impossible to do or be anything else.

MS Spasms

I continue to experiment with different strains, delivery methods, and dosing of different cannabis products. I’ve added more use of ibuprofen, a topical cannabis salve that is remarkable for pain, and topical Voltaren – also for pain. Sometimes I feel like I got it dialed in and then I’ll try the same combination that it won’t work at all. I keep a daily log on my phone to try and find patterns.

Cannabis collection

“If I take ibuprofen and half a gummy at 5 AM in the morning, does it make it easier to get out of bed?”

“If I make sure to dose with cannabis every two and half hours, do I stay ahead of the spasticity train?”

“Is ibuprofen and topical pain relief more effective?”

“Does it work better if the cannabis is high CBG? High CBD? High THC? Half-and-half?”

It would probably be faster learning if I did this more scientifically, but I want to feel better fast, so I tend to throw things at it with well documented desperation.

Treatment Log

I recently ordered a book on managing MS symptoms and found a passage in the spasticity section that outlines “paroxysmal spasms” and describes exactly what I’m feeling. The physician author recommends an anticonvulsant medication, Tergretol. I met with my physician this morning and she has prescribed a similar medication for me, Oxcarbezine, to see if it makes a difference. In her experience this medication is equally as effective with less side effects. I will pick up this prescription this afternoon and get started. It can take up to two weeks to know if it is effective at all and if we need to do any dose changes before determining. Fingers crossed.

Book Passage

Thought process on spasticity causes/triggers:

MS causes spasticity and I had it prior to treatment. Experience then was of a constant moderate stiffness and difficulty bending ankle, knee, hip on right side. That was pretreatment baseline.
Increased spasticity, often lasting 6 to 12 months or longer, is common after chemotherapy with cyclophosphamide. Typically people report it starting closer to 8 or 10 months post treatment, but a meaningful contingent have it kick in around 2-3 months post treatment. Maybe I’m in that bucket and that’s why the intensity has increased.
Decreasing baclofen can cause rebound spasticity. It is unclear how that process is impacting my experience.
The last couple of weeks have been getting ready to travel to Colorado for Kara’s college graduation. This is a big deal for me three months post treatment. I’m still definitely in recovery and this will take a lot for my body. But it means so much to me to be there that it’s worth it. Is the stress about future events triggering my body to have more spasticity?
Pain in the muscles of my hips and low back, both caused by spasticity and triggers spasticity. This is why pain management is an important part of this picture.

Two important insights/learnings from the last couple of weeks:

More is not better. Because of my personality my instinct has been to try and do as many reps of PT exercises as I can and to increase what I can do every couple of days; ultimately to “push”. The more I can do, the faster I will heal right? This is paradoxically untrue. The harder I push, the more my body fights back. I’ve been learning this lesson the hard way. I have made it my practice starting last week to be gentler and to let my body go through the long process of healing. And it is a long game.
I have had an AFO (ankle-foot orthosis) for a few years, but barely used it. The device holds my foot in a flexed position (or at least 90° to my shin) and I was nervous that this would increase compensatory movement or cause my ankle muscles to weaken. I started using it over the last couple of weeks and I noticed that it decreases my spasticity and increases stability. For lack of a better description, it makes my brain feel safe and so it makes movement more natural. I have now learned that when I take it off, regardless of what I’m doing, the spasticity can kick in hard, like it was just waiting to spring. My best understanding of this phenomenon is that my brain no longer feels safe when it comes off and it goes into a protective mode. I wait until bedtime, right when climbing into bed, to take it off or the spasticity goes through the roof.
This product is amazing!

Key Moments:

Baclofen currently at 10 mg per day (5mg AM and 5mg PM). Will decrease the last 10 mg after returning from care’s graduation.
Met with my PCP on Monday and have begun decreasing tramadol (used for lower back and hip pain for sleep at night). Cannabis “wonder rub” is working wonders, no pun intended. This taper will take approximately six weeks, this is week one.
5/17 I clearly felt sensations in my feet that I haven’t felt in a while. Peripheral neuropathy has made the mostly numb, but yesterday they felt more normal like I could feel blood flow through them and I could feel toes move individually. Felt very energetically different.
Also 5/17 had one of my most difficult mornings where I didn’t know how I would get out of bed and get dressed. The spasming was so painful that I just sobbed. I called mom and she came right over. By the time she got here some of my medications had kicked in, or my body had just come online or something else happened, but I became able to move more freely and find equilibrium again.
I have tried acupuncture twice over the last two weeks and it has been an uncomfortable experience. My spasticity is so trigger-happy that the needles and the energy created by the acupuncture, whatever’s going on there, explodes the spasticity. Need to keep thinking if this is a helpful path forward.

April 28, 2022June 9, 2022

Post HSCT – Month 2 Symptoms Update

Magnolia Flowers

Last Saturday was exactly 2 months since I returned home. My treatment cohort gathered for our monthly zoom to catch up on how everyone is doing post treatment, which for the most part is really well. We agree that we are done with the Groundhog Day life that is our current isolation and hyper immune protection posture. And everyone is craving salad.

I have continued my process of weaning off baclofen since my post two weeks ago. There have been rough days in these last few weeks; intense moments of rebound spasticity, usually in the evenings, and a lot of big mood swings. I am currently at 15 mg per day, down from 60 mg per day.

I have been experimenting with different strains, doses, and timing of edible cannabis to reduce spasticity and over the last couple of days I seem to have gotten it dialed in. My research pointed me to any product that has a 1:1 ratio of THC to CBD. I have found a couple of RSO (Rick Simpson oil) strains that work, “sour tsunami” and “critical mass”. I have also had luck with an RSO strain called “Milky Way” which is very high in CBG and only a small amount of THC. Oddly, this strain makes me feel the most “high” so I use it less. 1:1 gummies, half of one every 2.5-3 hours, are also a winner.

My day-to-day routine of physical therapy, occupational therapy, MSGym, and meditation is ongoing and I’ve remained consistent. I feel like I’m dialing it in over time, and I plan to meet with my physical therapist next month to refine the plan.

If I had written this post three days ago, as I intended, I would’ve been writing about darkness and struggle. The last couple of days seem to have found a balance, both physically and emotionally, leaving me more connected to a hopeful and strong recovery. The darkness and struggle will likely return with the next baclofen dosage drop, but I now understand it better and can ride it out more easily.

Mobility/Walking/Legs

My mobility/walking/legs have been all over the place this last month. With weaning off baclofen, I’ve experienced some of the most intense spasticity occurrences I’ve ever had. Many nights my right leg spasticity will pull in opposing directions. My leg will involuntarily pull up into a full marching step at the same time it is doing everything it possibly can to stay straight. The pulling up wins, but it feels like it’s causing a little bit of damage in the process.

When my spasticity is strong walking is almost impossible and it can feel like backward progress. As I’ve gotten better at getting spasticity under control with cannabis, I am beginning to feel the growing and strengthening capacity and competence of my legs. As I’ve tapered off baclofen, I’ve had moments of feeling viscerally connected to my legs in a very functional way and they seem more able to take in information and gain strength, like they were returned to me and I didn’t even know they had been lost.

I took a video of my walking a couple of days ago when my walking felt spastic and stiff and I decided to make a video again today to reflect how much stronger it has been feeling. Fluctuations are going to be something I have to get used to, there are going to be rough days and days where I feel strong and I cannot get attached to either.

Hip pain is the other ongoing issue I want to track in this section. I have a lot of pain in my hips. I’ve had sharp pain down my left lateral hamstring for close to 10 years and more recently of lot of hip pain in the sacral area wrapping around the outside of the hip joints. I have seen a cacophony of specialists to try and resolve this. Imaging doesn’t show any structural problems. The conclusion of everyone I’ve seen so far believes it to be muscle/tendon/ligament pain. Locked up, frozen hip structures is incredibly common with MS when legs and walking are impacted. As I do more physical therapy exercises to get my hip joints and hip mechanism working again, the more pain I’ve developed. Sometimes I think it is the pain one goes through when beginning to use muscles that have not been working for a long time. With this belief system my logic is that the stronger I get the more the pain will dissipate. And that may be true. Other times I think it is the pain of something that is torn or broken, and nobody has found it yet. With this belief system I worry that I’m doing more damage than good.

If this truly is something that will dissipate as I get stronger, that doesn’t mean it will be fast and I would love to find a way to do both, get stronger/keep moving/ make my hips work and decrease pain while doing that. Pain and gaining strength don’t work well together.

Arm/Hand/Writing

This is an area where I have put less than ideal attention. I don’t do my arm exercises as often as would be beneficial, though I am doing the more that I had been, so it’s a start.

I’ve been trying to teach my right hand how to be a competent hand writer again. I decided to try a method of learning a specific “font” where I work by tracing and then practicing – a very humbling process. I would say as far as this month goes that I am holding steady on hand/arm function. Can’t tell that I’ve gained any meaningful ground, but I also don’t feel like I’ve lost any. As a side note, I’ve also been trying to play ukulele. Surprisingly I am finding this very fun even though I suck and will likely suck for a very long time.

Handwriting Font

Fatigue/Energy

I continue to be MS fatigue free. I get tired and I run out of leg endurance for movement/walking/exercise, but I am not completely wiped out before I even start the day. This is a huge win and continues to inspire me to believe that healing is possible. If treatment had an impact here, I have to believe it made a bigger difference than that.

Bladder

Pretty stable here as well. I have a neurologist appointment set up for the beginning of May where I hope I will have more clear answers. As I mentioned before, the retention side of my bladder issues continues to not be an issue anymore. I still have urgency and frequency, but I now know that my bladder and peacefully which reduces the risk for urinary tract actions, a really big deal. I continue to track daily to see if there’s any pattern or change.

Bowel Function

Another win. At this point, bowel function is totally normal, no issues.

Hair Growth

Hair has been stubborn to start its rebirth. About a week ago we did another shave as the first growth tends to be pretty weird and patchy. We may decide to shave it one more time to help the new growth be as thick and plush as possible, will see with this growth does before we decide. For now, I’m still bald.

Bald Head 1

Bald Head 2