Where? Who? Why? What? When?

What is this place?  Why is it here?

Howdy!  Pull up a chair.  I built The Plucky Platypus Pub as a hangout for those who have an interest in multiple sclerosis (MS).  I read a lot -- in the medical field especially -- so I intend to pass along to you anything I find interesting or informative not only about MS but also about other health topics.  Eventually, you might enjoy what you see here in art, music, books, and quirky randomness, too.  Mostly, I hope to be an encouragement to those with chronic illnesses.

This notion to write a blog started in September 2013 because I had just gotten on Twitter for the first time, and...well, there’s not much space in that little box they provide.  I like to write.  As I start spilling out my thoughts, I can see the character countdown quickly going into the red.  Yes, it so quietly trains one to be concise, but it can also be constraining.  My words must fly free.  [Just watch yourself when looking up.]  

As you'll eventually see, if you stick around, I like to surf the net, too...and I like to share my "finds."  

Writing, research, and net-surfing serve as forms of entertainment for me, and I hope this place will entertain and assist others in the process.

Who is this person?

My name is Jennifer; “Jennie,” if you must shorten it.  I had no say in my given name.  My sister chose “Jennifer” and persuaded my folks of its merit because John Denver’s daughter has the name.  [I don't think she has yet forgiven the guard for stopping our camper at John Denver's driveway gate, by the way. (smirk)  They did give her an autographed photo, though.]

Now I realize that the typical way to explain who I am, besides the name, is to list interests, hobbies, activities, location, and physical description.  Indeed, one’s identity is usually wrapped up in those things, and I am no exception.  But, you’ll eventually discover much of that along the way, if you keep reading.

It is often said.  “My disease isn’t who I am.”  “It isn’t an identity.” 

I understand the thought, yet I’ve had health issues long enough that it truly is a part of who I am.  Health affects every aspect of our lives and does so every day – past, present, and future, whether or not we are aware of it at that moment.  

For me, it has affected my decisions at nearly every crossroad.  Yes, I am more than “that sick girl.”  However, like it or not, it is part of how people see me and how I see myself.  I made peace with that long, long ago because there’s nothing about me that puts me above anyone else.  Why should I get to lead a hardship-free, perfect life while someone else doesn’t?  Everyone has some sort of struggle.  Sometimes, it is visible to others.  Sometimes not.  

This is the way it is done, right?

It seems to be the social pattern to describe the road of symptoms and tests that led up to an eventual diagnosis and then explain what treatment options have been chosen.  So, I’ll conform, though your reading eyes may fatigue and your brain turn to bored mush by the time you get to the end, if you get there. (smirk)

In the beginning...

In the late 1960s, in Nebraska farm country, this youngest child was born to a middle-aged couple.  Mom is the feisty granddaughter of Irish and Scottish immigrants.  Dad, a WWII vet, was born to Kansas farmers with a mix of heritage – English, German, and a pinch of Cherokee.  I mention this because some believe childhood environment, heritage, and/or birth location affect the likelihood of MS.  

From a health standpoint, both sides of the family have been plagued with cancer throughout each generation…to the point we aren’t surprised when one of us is hit with it.  We tend to fight it well and survive.  

There are other problems running around the family pool.  Dad’s sister as well as her son had/have Alzheimer’s.  The same son also has Parkinson’s.  Another cousin has MS while her sister has ALS.  I grew up feeling closer to my cousins than to my siblings, so their struggles are quite a motivation for me in my medical research.

Younger Me

Toddler Days and School Haze

As I look back at my life so far, I see signs that I had neurological problems at least as early as Junior High (ages 11-15).  But, I grew up just ignoring what I could and simply enduring what I couldn't.  

"I'll stay here just long enough to throw up a few times, then I gotta go!  I have mud-pies to make, horses and cats to visit, neighbors to harass."

Does high fever in childhood cause MS in adulthood?

Only after my childhood immunizations did my parents find out that certain shots should not be given to kids with allergies.  They seemed to send my body into a downward spiral.  I spent a good portion of my early childhood in doctor offices and in bed.  I had pneumonia twice in one year.  Dad said he thought they’d lose me from that.  Because of illness and severe allergic reactions, I missed school for much of my kindergarten to third grade years. 

When I was in school, I was a stranger to the other kids and kept to myself anyway.  It is no wonder they treated me like a visiting alien with some dangerous and contagious space fungus!  I suppose it didn’t help matters that we lived in the land of the famous Cornhuskers!  

Schools and parents were obsessed with athletic competitions.  Sickies weakened “the team,” even if it was just physical education class (P.E.).  Kids who did not know game rules AND were sickies were definitely not an asset in serious play.  So, I was shunned at school and especially in P.E. where my lack of strength was most evident.  

My home life was a pit of turmoil beyond the sickness, and I don't want to get into that.  Basically, it was a less-than-perfect childhood -- physically, mentally, and emotionally.  However, I accepted it as simply the way my life had panned out.  My earthly father and my Heavenly Father were there for me, and that was all I needed. 

Is MS caused by a lack of sunshine (Vitamin D)?  

When I wasn’t in my room (usually reading) or doing household chores, I was outside.  I had the privilege of having parents who believed in taking trips every summer as well as simply getting out and being active.  So, we spent a lot of time in the sun: fishing, golfing, and hiking.  Like other kids, I climbed trees and simply played outside whenever possible.  Once I was well enough to ride a bike, I spent every summer day pedaling for hours around the neighborhood.  And, when no one was looking, I danced in the grass and did flips on the swingset bars.  In the winter, on mild days when it wasn't snowing, a friend and I walked to school.  I got lots of sunshine.

I stayed active as much as I could.  This was also about the time I discovered a book on yoga, "Yoga for Kids" by Kareen Zebroff and Peter Zebroff.  Yoga is something that has served me well in preserving strength, balance, and flexibility from that point onward.

Can kids have MS?

When I about 11 or 12, my feet and ankles started hurting whenever we ran in P.E.  I’d developed asthma, so the running wasn’t great in that respect.  This was outright pain, though.  My ankles took turns feeling sprained.  The school nurse would put ice on the culprit, but couldn’t find anything visibly wrong.

In 7^th and 8^th grades, we got a break from P.E. so those were golden years for me.  (chuckle)  Then, as if I wasn't nervous enough about starting high school, my freshman year came with mandatory P.E.  I was stronger by this time.  Plus, the ankle and foot thing had gone away.  So, I was pleasantly surprised that I enjoyed running in floor hockey, flag football, and soccer for the first half of the year.  

Then, my legs grew unreliable.  I’d never been coordinated, but I hadn’t been concerned about falling.  Now, though, I started tripping.  And, the most disturbing symptom came for the first time – the peg leg! 

Peg Leg Pete

Peg Leg Jennie

After a long session of dodgeball in P.E., the bell rang for us to all go to the locker rooms to shower and dress for the next class.  Standing there under the basketball hoop, I was frozen.  

"Okay, body," I inquired in the least confrontational manner I could muster.  "What's your cotton-pickin' problem now?!"

In shock, I realized I couldn’t feel my leg from the knee down.  It felt like the leg of a wooden puppet, heavy and nailed to the floor.  I was Pinnochio, going back to being no longer a real girl!  

Thankfully, I was all alone when this happened.  The coaches were in their office.  All the other kids had gone down to the locker rooms.  I was just a 5 foot island in the big gymnasium.  I'd calmly taken all my body had had to dish out all these years; but this time, I was scared.  What was happening to me?!  I tried to use my leg to get where I could sit down, but I couldn’t control it.  It just dragged behind, and I ended up lunging forward toward the floor.  I caught myself, then hop-dragged my way over to take a seat and ponder this strange event. 

“It’ll be okay once I rest a bit,” I said to myself.  

And, it did recover enough that I could stand, lean against the wall, and make my way down to the locker room.  I didn’t take the time to shower because being late for the next class would call attention to me.  I was shy and wanted to blend in.  Nobody needed to know what was going wrong, including my parents.

I hurriedly changed clothes and started hobbling my way up the stairs, around the gym perimeter and on to the classroom.  Eventually, feeling came back into the leg, but I’ve never fully trusted my legs from that moment on. After sprawling on my face several times from legs giving out, I stopped running.  I haven’t run since high school.  That's okay.  Running and falling can both hurt the floatation devices.

I stayed active, though.

I did go out for golf, and I was good at it.  During the summer, I mowed lawns, biked a paper route, and eventually worked as a greenskeeper assistant at the golf course.  I had some fatigue in the heat of the day, but I kept going.  

When I got to college and found out I needed a couple of P.E. courses there, I chose aerobics and dance.  The first couple of years of college were awesome!  I felt like all the other kids.  I was healthy, and I could dance without incident.  I walked to school, to the grocery store and laundromat, and to the golf course several miles away.  I biked all over town.  At home for the summers, I continued working at the golf course and taking regular walks and bike rides.

Then, reality hit again.  Shall we call it a "relapse" yet? 

My Junior year of college, the stomach cramps began.  I scaled back on my classload and picked up a job.  

Then, I stopped classes altogether and started working full-time at a job I absolutely loved -- economic development.  The stomach problems had gone away for a while; but, unfortunately, a new boss came into the picture, along with his cigarette smoke.  

I’d walk into the office in the morning.  The smoke would hit me, and I’d nearly double up from the pain when it would reach my lungs and stomach.  I’d endure all week, then be so worn down by Friday that I’d call in sick and be miserable with allergies all weekend.  Eventually, I got so sick I had to quit and move in with friends. 

Of course, I didn’t share any of this with my family, even my beloved father.  I’m not sure why.  I was solitary and private, I guess.  The stomach cramps got so bad that I got desperate trying to figure out what I could eat that wouldn’t cause problems.  I went to a diet of just bland potatoes and rice.  Eventually, I resorted to drinking only the water in which the potatoes had been cooked.  [Yeah, not one of my smartest moments.]  I lived on that for a couple of months before gradually reintroducing potatoes and rice again, then ground turkey and pineapple. 

This is about when my father stepped in and dragged me off to the doctor.  I was 5 foot 10 inches tall. [I grew a lot after high school.]  But, I weighed just 125 pounds and much of that was probably poofy hair.  

Dad was scared I had an eating disorder.  I was plopped in front of a GP and, through him, I reassured Dad that I knew I was skinny and was trying to gain weight.  I convinced him I was reintroducing foods and on my way to health again.  Indeed, I thought I was.  I began eating more foods, and the stomach cramps eased up a bit.  To fend for myself, I was working “temp” jobs.  And, I was getting stronger.

Then, everything went really haywire again.  An absolute fatigue joined the daily throes of doubled-over stomach cramps.  My arms and legs joined the party by going numb and tingly then feeling like they were being painfully squeezed by a giant python.  My legs became so weak and numb that I bought a cane and used it on bad days, and I rented a wheelchair when friends and I went to the mall.  I am a big fan of Charlie Chaplin, so dressing in baggy black clothes made using a cane a bit easier on my young ego.

Several months later, when I could go without the cane again, I was driving the seven hour stretch to my parents’ home for a visit when my vision suddenly got “wonky.”  Blurriness started jumping back and forth from one eye to the other, then they started jittering back and forth on their own.  I couldn’t control them.  They were rapidly vibrating of their own accord.  

I pulled over and closed my eyes.  I could still feel them jib-jiving back and forth under my eyelids, and it felt like someone was stabbing railroad spikes into my eye sockets.  This was inconvenient!

I sat there on that deserted strip of road for a long while, praying that I could soon go on.  This was before the days of cell phones, and I was a long way from the next town.

Eventually, the uncontrolled jittering stopped.  So, I drove on, using whichever eye was not blurry at the time to see my way down the road.  

During my visit, the jittering came back, along with double vision.  And the whole world felt tilted at a Mad Hatter angle.  I’d entered a weird, dark fairy tale, and I definitely wanted to find my way back out of its nasty pages!  Again, this happened while I was driving, tootling around our little town.  So, I pulled over and closed my eyes for a while.  I think I even fell asleep.  When I opened my eyes again, the jittering was still there, but I could at least see well enough to make my way back home and go to bed early.

I’d already seen my allergist about the stomach cramps and was getting straightened out there with shots and reintroduction of foods.  This was a whole new game.  

When I got back to my own home, I went to my allergist about this new problem because I trusted her logic and expertise.  Well, and you've just got to like someone with a thick German accent and looks like Julia Child!

I told her about the leg and arm problems, too.  She decided the first step was to send me to the eye doctor.

Like all eye doctors I’ve seen, he was fascinated by the laser surgery scar I’d acquired when I suffered retinal detachment. [A drunk driver ran into the car my parents and I were in when I was a college freshman.]  Other than that, my eyes checked out “A okay.”

By this time, I’d been doing a lot of research in medical journals in the college library and had a theory of my own – multiple sclerosis.  After my eyes checked out, I went back to the allergist and asked her what she thought about it being MS.  She nodded and said it was a possibility, but she wanted me to get a couple of blood tests first to eliminate arthritis, lyme disease, lupus, and other such masquerading invaders.  

I checked out fine in that regard, so she referred me to a neurologist.  I went to his office armed with a written list of symptoms and medical history, and I asked him if he thought it might be MS.  After looking at the blood test results and adding a few more of his own, he did an in-office exam of my reflexes and asked me to walk back and forth in front of him.  Then, he ordered an MRI and did a spinal tap.  

This was in the early 1990s.  

The lab techs and an accompanying friend gazed at the MRI images and teased me about there being so much space between my brain and my skull. Seriously, though, that would explain why I felt it rattling around up there every time I sneezed.

When I met up with the neurologist again, he said the MRI and spinal tap were "clear." I started searching my brain files for other ailments it could be, but he proceeded to diagnose me with “possible early MS.”  Huh?  

He explained that it wasn’t unusual for those with early MS to have no visible lesions on the MRI and to have a “clear” spinal tap.  He also suggested I get an MRI every ten years or whenever I had an episode of problems again.  That way, as soon as lesions showed up, I could start taking medication.

Okay, so ignore it.  I could do that.  I was an old pro at this.

Fast forward a few years: 

I was working at the computer.  Getting up from my chair, I didn’t realize my feet had gone numb.  As I began to walk, my leading foot’s toes curled under and I ended up stepping on my own toes. Yes, it is possible.  I was super flexible [contortionist], and my friends had called me “monkey toes” for a reason.  

A dark strip of bruising ran across the base of my toes on that foot.  When I went in to the family doctor for something else, I was limping a bit from it and he noticed.  I told him what happened, and he wanted to see the foot.  

He frowned and started poking my legs to see where I had feeling and where I didn’t.  He took the reflex hammer to my knees.  I knew what he was thinking. I told him about my neurological history, and he said, “I think you do have MS. I won’t say so in your files because you might have troubles getting or keeping your insurance, if I do.”

This was the first I'd ever heard of the concept of keeping "multiple sclerosis" off records so that insurance companies wouldn't balk.  Hmmm.  I had much to learn.

Same GP, a few years later:

I was experiencing left leg weakness and numbness and another new and exciting symptom!  I was innocently resting in bed when a jolt of electricity screamed through my back, down my legs, and then back up through my spine.  I knew I lived in tornado alley full of thunderstorms, but this was a quiet, clear night out.  The storm was in my body.  

Hubby and I decided I should go to the family doc and describe what was happening as well as inform him of this wondrous development in my body’s atmosphere!

The doc again mentioned MS and set up an appointment for me with a traveling neurologist who visits small town hospitals out here in the boondocks.  I hadn’t seen a neurologist since the first one I’d seen in the early 1990s.  This was the early 2000s.  It probably was time for another MRI.

I suppose where I went wrong was when I handed the new neurologist a write-up of my complete medical history, including the gynecological problems.  

When I was 22, the gynecologist thought I was going through very early menopause and my left ovary was so hard she figured I had endometriosis.  

Also, the write-up talked about the diet changes I’d gone through to try to self-cure the stomach cramps.  

This neuro did a nerve-conduction study on my left leg that didn’t show any problems.  He said that there was no way it was MS because "MS is never on just one side."  

When asked what the problem might be then, he said he felt the endometriosis was bad enough that it was putting pressure on the nerves in my hip and causing the sporadic left leg numbness.  That made some sense for the leg, I agreed, but what about the numbness and tingling in my other limbs as well as the eye problems?  

He said it was probably nerve damage.  We'd looked that up and asked him if he thought I'd possibly given myself beriberi from the diet I’d had for several months.  Possible, and interesting theory.  Yet, as I thought about it, why did I have nervous system symptoms before I ever had the diet changes?  So, in my mind, that theory's out.

In summary, MS didn’t jive with this neurlogist because, in his experience, it never manifested itself only on one side of the body.  And current knowledge of MS at the time said it never happens to kids.  But, he went ahead and ordered an MRI because we and our family doctor asked for one.  

When I met with him again, he said, "No lesions. So, it isn't MS," and he sent me on my way.  Perhaps it was nerve damage.  Perhaps it was something we could not yet identify.  Perhaps it was all in my head.

Back to the waiting game. 

At the next yearly exam we body-modest ladies call "torture," I visited with my current gynecologist about the possibility of my having endometriosis to the degree it would put pressure on nerves in my hip.  

After a thorough examination with that in mind and a couple of scans, he said that if I had endometriosis, it wasn’t widespread enough to put pressure on any nerves and certainly not to cause leg numbness.  Hmmm.  Well, that theory was out the window.

Heat is not our friend.

Meanwhile, I was learning that heat and I didn’t get along.  What convinced me I needed to stay cool?  A couple times of mowing the lawn in the summer sun.  I ended up dragging myself to the shade so I could eventually recover and shakily walk into the house.

Fast forward to the summer of 2012.  

The dentist accidentally hit a nerve in my jaw with the needle when he was numbing my gums.  I had nerve pain on that side (the right) for several weeks.  Then, I got an ear infection on that side.  I was in misery until my eardrum burst.  But, when I looked in the mirror, I saw that my face on that side seemed to be drooping.  And, it got worse!  The corner of my mouth dropped.  I couldn’t close my eyelid on that side.  Stroke was the first thing that came to mind because that’s what my father had had.  But, after a little research online, I diagnosed myself with Bell’s Palsy. 

Sure enough, as soon as the doctor on duty walked into the exam room, he said, “You have Bell’s Palsy.”  

He gave me ear drops to clear up the infection and told me to wear an eye patch until the palsy went away. The patch wasn’t enough to keep my eye closed, so I rigged up padding between the patch and my eye that would force it closed.  

Eventually, my face and eye went back to normal, but then I got a bad cold that ended with another flare-up of whatever this is (I'll call it "MS").  There were the usual visual problems, but yet another new symptom showed up for the list – vertigo.  The world was tilting as it had so many years before, but now it was also spinning like a wild amusement park ride -- only I wasn't that amused.  

I was crawling from bed to the bathroom because I needed both my hands and knees in contact with the ground so I knew that direction was “down.”  Eventually, I could walk upright enough for me to see our current family doc.  He knew enough of my medical history to know that MS had been considered back in my 20s.  He asked several questions about current symptoms.  He looked over at the medical student who had been studying my records on his laptop.

“What do you think?” he asked the student.

The student looked at the doctor, looked at me, and said, “Well, looking at what age you were when you had your first big episode….looking at what has happened in the meantime, I can’t think of anything it could be other than MS.”

I nodded.  

The doctor looked at me and said, “You haven’t had an MRI recently.  That technology has gotten better over the years since you’ve had one.  I’d like to see you get another MRI.”

“I don’t know,” I said.  “They are expensive, and they haven’t shown a thing previously.  It seems a waste, even if technology has gotten better.”

“Well, do your research, as I know you do.  Think about it and let me know.  I’ll order an MRI for you, if that’s what you decide.  It is up to you.  But, I do agree with my colleague.  Knowing your history and from what I’ve seen, I can’t think of anything this would be other than MS.”

I again nodded, thanked them, and left with a prescription for Dramamine for the vertigo, which thankfully worked fairly well.

Wow.  Are you still reading?  Impressive!

Eventually, I got to feeling better and it is now 2013.  I’ve done a tremendous amount of research on MS in the past year.  I still haven’t agreed to an MRI, but I’m considering getting one via a neurologist who specializes in MS so that perhaps I can start on a disease-modifying drug…maybe.  

I’ve learned that, yes, all of my symptoms have been experienced by those with MS.  I’ve learned that, indeed, children do get MS.  I’ve learned that, indeed, MS does manifest on only one side of the body sometimes and, for fun, it does skip around from one body part to another.  I’ve learned that those periods of time when I was symptom-free didn’t mean I didn’t have MS but rather could have been times of remission.  And, the more I read, the more I realize this probably is MS and I’ve probably had it since I was a kid.  

Does that mean it is extremely slow-moving?  
Does that mean my body has learned how to fight it off on its own somewhat?  

I’ve lived with it so long that I tend to ignore all but the worst of the symptoms.  Has it gotten worse without my really noticing until now?  

I’ve always walked and danced for exercise, but that’s getting tougher to do.  My feet drag more.  The fatigue has stayed.  But, there's still a bright side.

The diet and exercise advice Montel Williams gave on the Dr. Oz show as well as Rachael Ray seems to be helping.  The fatigue isn’t as bad anymore, and I don’t react to the heat so drastically as I did last year.  So maybe the self treatment is enough.  Do I really need the disease-modifying drugs? 

Or, am I able to ignore it because it is in remission again?

That’s where I am now.  Another crossroads.  
Do I stay in limbo, doing what I can to help myself?  
Do I go get another MRI?  
What if it still doesn’t show lesions?  
What is this then?    
Could it possibly go this long and still not have evident lesions?  
What if I get worse and I never have lesions so can never try the meds that might slow the progress?  

Yup, living in limbo seems to be the norm now.  Maybe I’m too comfortable here in limbo land.  The amusement rides are lame anyway!