Tag Archives: Symptoms

Coming out of the closet with my MS, just a little bit. Sort of.

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If you have read my posts, you know that keeping my MS a secret has been a critical goal of mine.  Unfortunately, my walking has deteriorated to where I can no longer hide it.

The first colleagues to notice were told that I hurt my knee or ankle.  That bought me a little time, but could only be used as a temporary excuse.  This evolved into saying that I have a bad leg and it’s acting up.  That’s true.

When it wasn’t getting better, I got more questions of what was wrong with it.  I tell people something along the lines of not being sure what caused it, but that it appears to be nerve damage.  This is also true.  It has the added benefit that while nerve damage can heal, it takes a long time typically.  I don’t know how much extra this bought me.  Maybe a year or two?

People have also noticed the antenna attached to my shoe for my Bioness unit.  It’s prompted a number of funny inquiries like “what is that? are you under house arrest?”  “are you a child molester or something?”  At that point I explain the bad leg, nerve damage and the therapy device that I am wearing to exercise it.  The typical reaction is to tell me about their father who had drop foot, their brother who had a spinal cord injury and uses a similar device or the story of how they used to go to physical therapy for their “fill in the blank”.

In a way, it’s a little bit of a relief not to have to completely hide it.  So why not just come clean and tell everybody that I have MS?

Two reasons.  The much less significant reason is that I still want people thinking of me as me, and not that guy with MS.  Being known as the guy with the limp isn’t great either, but maybe it’s a little better.

But the biggest reason is to protect my job and income for as long as I can.  As I’ve mentioned in other posts, I work in a very competitive shark tank.  MS can cause cognitive issues in some people.  Someone will eventually look it up online and read that.  The truth is that I have been lucky and haven’t suffered that particular symptom at all.  In fact the MRIs of my brain look very healthy and I still consistently rank well in any mental measure that I can track.  But eventually I am bound to say something in a meeting that may not be exactly sharp, and I am worried that someone will jump to the conclusion that it’s my MS, when they wouldn’t think anything of it otherwise.

So for now, I have a bad leg with some nerve damage.

Pincushion Part 2, Acupuncture and MS

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Early on in my MS journey I had my first experience with acupuncture.  At the time, I was not yet diagnosed.  I just had an occasional odd tingling in my left thigh.  At the urging of my wife, I agreed to try her acupuncturist for a sore back and neck that was plaguing me.  I went a few times and while it did nothing for my back, I curiously noticed that the tingling sensation in my leg disappeared for a few days each time.

Fast forward to today and we now know that the tingling was an early symptom of multiple sclerosis.  My disease has progressed a bit in that walking normally is becoming increasingly more difficult.  I thought that it might be time to give the needles another try and see if it can help with my current symptoms.

The acupuncturist said that to give it a fair shot, I would need to go once or twice a week for at least six sessions.  I agreed to that plan.  Meanwhile, I researched online and found a study that claimed to have success with MS by using a certain type of scalp acupuncture.  I didn’t mention this to the acupuncturist, but apparently he was aware of it, or at least found it online like I did.

In my first of six sessions, he performed many of the standard spots like he had a year earlier.  Unfortunately, there was no effect.  For sessions two through six, he focused on the scalp and gradually increased the intensity of the treatment each time.

The typical acupuncture does not particularly hurt.  In fact, it is somewhat relaxing.  The scalp acupuncture, on the other hand, hurts a lot.  For the typical, you can barely feel it as he flicks the needles into you.  For the scalp, he pushes them in, guiding them up under the skin.  In later sessions he would also twist and move them around for more stimulation.  Ouch!

I had mixed feelings.  I really wanted this to help with my disability, even if only temporarily.  However, the thought of having to be tortured like this once or twice a week, possibly forever, wasn’t terribly appealing.

Four weeks and six sessions later, I had no change in my symptoms at all.  I was disappointed but at the same time relieved at not having to get my head stabbed anymore.  I have no doubt that acupuncture may work for some people with some conditions.  For me though, the book is closed.  Onward to something else.

When I first lied about my MS

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I am generally a pretty honest guy.  Life is complicated enough as is.  Having to keep track of different falsehoods that were said to different people just isn’t worth it.  Things are a lot simpler to organize if they are consistent; which means telling the truth.

That having been said, I am in a position where I feel that I just don’t have much choice sometimes.  My MS is a secret known only by my closest family.  I am very confident that when I come out of the closet about my MS, that my earning potential will be negatively impacted.  If it isn’t necessary yet, that’s not fair to my family.

My first cover up occurred about a year ago.  I was walking with a colleague and stumbled slightly stepping off of a curb.  He asked if I was alright.  I blamed it on my new glasses.  There is a small element of truth to this.  It was the first time that I wore progressive lenses and I wasn’t accustomed to the ground being out of focus yet.  Coincidently, he had also just switched to progressives and was struggling with getting used to them.

My second time just occurred and was a bit more of a blatant lie.  I was scheduled to play in a golf tournament with work colleagues.  This presented a few issues:

  • I hadn’t played in almost a year and had not gotten out to the driving range like I had planned.  This was a tournament, which meant that I would be dragging down the whole team.
  • It would be four hours of them closely observing me walking across open spaces.  That’s more of a chance that someone would notice that something didn’t look right.
  • It was almost 100 degrees out and we would be playing in the sun in the heat of the day.  Overheating can often contribute to flareups of symptoms with MS and should generally be avoided.

So I lied.

I claimed to have hurt my back.  It’s pretty common with out of shape guys my age and fit the situation well in that it would make golf very difficult but not prevent me from doing much else.  I went to the tournament and joined everyone for drinks and dinner, but did not golf.

It was a little frustrating to watch the guys playing from the clubhouse window and wanting so badly to be out there.  However, I am convinced that not playing in the heat was the smarter move for my health.

I also felt bad about lying to colleagues and friends, but I am still convinced it was the right thing to do for my family and career.  Sometimes we have to do what is needed to survive.

Hopefully I will not have to lie about my condition too many times.  The lesson learned is to plan better and not get myself in circumstances that force me to make these decisions.  In hindsight, signing up for a golf tournament in the heat of August with work colleagues should have been recognizable in advance as a dumb idea.

Happiness is a good MRI scan

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My first MRI was one year ago.  At the time, I had virtually no symptoms.  To my shock and surprise, the scan showed numerous lesions on both my brain and spinal cord.  I was told by my neurologist at the time that it is not unheard of for a person to have a mismatch between their MRI and their symptoms.  Some people show very little problems on their MRIs, yet suffer significant symptoms.  I was the opposite.  Completely normal except for an occasional tingle in my leg, but with a quite ugly MRI scan.

Fast forward a year later and I went in to have my second set of MRIs.  During this time, my symptoms, while still mild, have progressed.  The tingle went away but has been replaced with balance and coordination problems.  It now requires a fair amount of concentration to walk without showing a slight limp or wobble.  Heel to toe walking has become a challenge.  I also have some spots on my foot that have a reduced sense of feeling.

Based on this, I went to my MS Dr’s appointment with very low expectations.  During the year I had been on Rebif for three months but had dropped it a month prior to my MRI due to an allergic reaction.  Prior to that I was not taking any disease modifying drugs at all.

I had accepted the fact that my MRI would show increased activity and lesions.  If it was bad when I had no symptoms, surely it would be worse now that I was suffering some of the effects of the disease.

But that’s not what happened.  My MRI actually looked better than the year before!  The scan of my spinal cord in particular looked better.  Maybe it was the three months plus residual effect of the Rebif.  Maybe it was just the path that the disease is taking for me.  It doesn’t matter what caused it.  I was incredibly elated and relieved.

My appointment was Friday afternoon.  It made for a wonderful weekend.

What to expect at the Neurologist’s office

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Or what to expect when you’re neurologing.

I have two neurologists and their styles are very different.  For this article I will focus on my first, the subject of my prior post that we will call Dr Fundamental.  We will get to the second one shortly.

Dr Fundamental’s routine is typical from what I have experienced with other appointments.  If you have apprehension about seeing a neurologist, relax.  It’s not painful nor do you have to work hard such as you might at a stress test.  The beginning of the appointment was just a conversation.  Doc F asked me many questions about my experience and history and took copious notes.  Being old school, his office was lined with bookshelves that must have had a thousand books on them.  No doubt, he has read them all.

We then started a physical symptom check.

Stand up please.  Stand still with your eyes closed.  Touch your nose.  Walk down the hallway.  Now walk back.  Walk on your toes.  Walk on your heels.  Walk heel to toe, heel to toe.  Alternating hands, touch your nose as fast as you can.  Squeeze my hand.  Push my arm.  Pull my arm.  Look at the dot on the wall.  Staring at the dot, tell me how many fingers I have up (checking peripheral vision).  Now follow my finger.  Tell me what number you see in this picture of colored dots.  Lie down please.  Close your eyes.  As I touch you with this safety pin, tell me if it is the sharp or dull end.  Dull, sharp, sharp, dull, sharp, dull, dull, sharp…..  Say yes if you feel the tuning fork vibrate as I touch you with it.  Take your left heel and run it up your right shin.  Now reverse. Doc F scratches a key up the sole of my foot to see if it reacts and curls up (the only part of the exam that isn’t comfortable).

What was the result?  I passed with flying colors.  We now had two reports of pretty ugly MRIs but with virtually no physical symptoms at all.  Dr Fundamental said that there was a disconnect but that it happens sometimes.  He does occasionally see patients that have pretty clean MRIs but massive symptoms, and others with bad MRIs that appear to have no symptoms at all.

I fell into the latter category.  The next step was to figure out what had caused it.

A pain in the neck

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The mysterious tingling leg, part2…

While I was waiting the six weeks for my nerve induction test (EMG), I developed a sore neck.  It was like a stiff neck that you might get from sleeping in a bad position except that it didn’t get any better after a few days of a heating pad like it should have.  The likely culprit was my baby daughter and the way that I was holding her to feed her a bottle.  In the end, this little culprit turned out to be a savior.

My doctor prescribed physical therapy for me.  I have mixed feelings about the PT.  Learning a few exercises primarily for my traps was not a bad thing.  However, it wasn’t much more than going to a personal trainer for a few exercises and getting a massage.  The massage of my neck felt good, but I question the long term benefit of the treatment.  After a few weeks of repeating the same exercises that I could easily do at home, I did just that and stopped going.

Then one day while I was holding my daughter and feeding her a bottle I noticed something very peculiar.  When I turned my head down and to the left to look at her, I felt the tingle in my thigh.  Every time that I moved in that direction the same thing occurred.  I mentioned it to my wife who mentioned it to our doctor.  “Have him come back in to see me immediately”.

I thought that I had solved the mystery.  It must be that I have a pinched nerve in my neck.  That might explain both the perpetual stiff neck and the tingling leg.  My doctor disagreed.  He explained how it was unlikely because the nerve fibers going down to the leg would be buried well inside of the spinal cord at the neck.  A sensation in my arm or a pinched nerve in my lower back might make my idea more plausible, but not a neck-thigh combo.

I had no other symptoms at all and was basically very healthy.  My doctor suggested sticking with the PT and watching it closely to see if it gets any better or worse.  Then, as I was walking out of his office, he called me back.  “Let’s not wait.  Let’s get an MRI done and see what’s going on in there”.

Good call Doc.

Can a tingling leg mean a heart attack?

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We will call this the case of the mysterious tingling leg, part 1.

Almost a year went by without any further symptoms apart from just feeling not quite as agile as I used to be.  Then one day, I started to notice a tingling sensation in my leg.  It wasn’t painful.  It was a similar feeling as to how your leg may feel if you have sat on a toilet seat too long.   The sensation was in the front lower part of my left thigh, a little above the knee.  It only showed up occasionally.  If I ran, it tingled.  If I walked very quickly to cross the street before the light changed, it tingled.  The strongest sensation occurred each morning when I would climb out of bed.  In each case, the tingling would cease as soon as I stopped the movement.

The tingling was so slight and intermittent that I didn’t concern myself with it until a month later when I had a conversation with a friend.  My friend had recently had a heart attack and was sharing his story with me.  He had all of the classic symptoms such as a tingling numbness in his arm and the feeling of an elephant sitting on his chest.  It got me thinking about my leg.  Was it possible that a tingling leg could be the same warning sign as a tingling arm?  Time to see a doctor.

My doctor ran me through a battery of tests including an EKG.  Everything looked great.  My heart was fine.  The doctor suggested that I schedule a nerve induction test to make sure that there wasn’t a problem there, which I did for six weeks later.

I went back home, very relieved, expecting whatever had caused the tingling leg to go away on it’s own.

When I first noticed something wasn’t right

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It was almost exactly two years ago from today.  I remember it distinctly because I was out of town at a conference for my work.  I was walking down the sidewalk with several colleagues and noticed that my walking felt a little strange.  It felt almost like I had been drinking, but I hadn’t.  I didn’t think much of it at the time and chalked it up to reduced agility as a result of being out of shape.  I recall thinking to myself how I really needed to make an effort to start working out again.

Two years later, this is now the normal feel of my walking and I know that it is a result of my MS.  Of course, I still need to make an effort to get into the gym more.