Tag Archives: MRI

Is it Progressive MS?

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As I mentioned in my last post, MS comes in four flavors.  Since 85% of those afflicted have the relapsing-remitting type (RRMS), most people start with an assumption that this is the version that they have.  Some of us hit a point where we have to start to question if we actually have Primary Progressive MS (PPMS) instead.  I am at that point now.

Let’s start by looking at some of differences between RRMS and PPMS.

RRMS has periodic flare-ups that largely or completely go away, only to come back again later.  PPMS has just a steady deterioration.  Looking back on the progress of my disease, it has been a slow steady deterioration.  I may have some days that are slightly better or worse than others, but I have never all of the sudden had an exacerbation.  Nor have I woken up and found that my leg was back to normal.  My strength and coordination in my left leg has just very slowly gradually gotten worse.  I used to think that my MS medications were just preventing any flare ups of new symptoms.  More and more I am suspecting that this is not the case; it may just be PPMS.

Demographics.  RRMS occurs in two to three times as many women as men.  It usually first pops up it’s ugly head in someone’s late teens to 20’s.  PPMS on the other hand, usually begins in someone’s 40’s and afflicts men and women equally.  I am a male and my MS began in my late 40’s.

RRMS activity tends to show up in the brain more and the lesions have more inflammation.  PPMS tends to show up more in the spinal cord and have less inflammation.  I remember my doctor looking at my MRI done with contrast last year and saying that it looked good with little evidence of new inflammation.  We attributed it to the Rebif that I was on working.  It could be.  Or it could just be that it’s PPMS and taking the Rebif was coincidental since it’s generally accepted that the interferons like Rebif don’t do much if anything for PPMS.

MS can manifest itself in many ways.  RRMS runs the gamut from eyesight, strength, balance, cognitive, bladder control, sexual issues etc etc.  Any of these can also occur with PPMS, but the most common symptom is trouble walking and mobility.  To date, walking/mobility is the only symptom that I have experienced.

What difference does it make and what does it all mean from a practical perspective?  The only advantage that I can think of for PPMS is that it is more predictable.  You know what you have and that it will gradually get worse.  There is less of a concern that you will all of the sudden wake up one day unable to see out of your left eye for a week.  The biggest disadvantage of PPMS is that it doesn’t respond as well to medications.  In fact, all of the disease modifying drugs approved for use in the U.S. currently are just for RRMS.  With some luck, that may be changing.

In my next post, I will dive deeper into my treatment options if we suspect that I may have PPMS.

 

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.

My new MS doctor – and finally, a diagnosis

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As I mentioned in my last post, Doc Fundamental suggested that we get a second opinion from Famous Doc B.  The four months that I waited for an appointment went relatively fast.  I was very busy with work and my family.  I was also spending a lot of time reading everything that I could get my hands on related to multiple sclerosis and other similar diseases.  But as my appointment approached I started getting more anxious to do something about this probable MS.  After all, it had been a year since I had first seen the doctor about my leg.

I had read a lot about Famous Doc B prior to my first appointment.  My wife and I agreed that if we liked her, we would see if she would take me on as a patient instead of just providing a second opinion.

Famous Doc B was wonderful.  Going forward, I will refer to her just as my ms doc.

My ms doc started with the usual discussion of my history and the typical physical tests.  Then we went into another room to analyze my MRI images on a computer screen.  Doc Fundamental had relied on the written reports by the radiologists of my MRIs.  My new ms doc read those, but analyzed the images herself.  She explained to me and my wife  what we were looking at and the significance of each of the lesions, taking into account the differences between viewing them from the MRIs done with contrast and done without, and what that means.

Doc Fundamental is a good general neurologist that I wouldn’t hesitate to refer someone to.  However, my new ms doc had dedicated her whole career to studying the progression of multiple sclerosis.  Her answers to our questions and her analysis gave me and my wife enormous confidence in her.

And then came the diagnosis that I knew in the back of my mind had been coming for a while.  My ms doc said that I have multiple sclerosis.

We discussed the options for treatment and her suggestions (a topic for the next post).  My wife asked her if she would be willing to take me on as a patient and she said yes.  I was thrilled.  My wife cried.  Not because of the diagnosis; we knew that was coming.  But because I was going to have such a great doctor by my side for the upcoming battle.

As a footnote, it was a lucky call choosing my ms doc over Famous Doc A for the second opinion.  Famous Doc A will only do second opinions now and is not taking on any new patients at all.

And now the marathon journey begins….

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 brain MRI and a “fundamental” neurologist

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The MRI of my brain came back and it wasn’t so hot.  They found multiple lesions.  This, combined with the demyelination in my spinal cord from my neck MRI, put concern on the table that this could be something serious.  And yet, I had no symptoms apart from the occasional slight tingle in my leg.  My primary care physician referred me to a neurologist.

When describing the neurologist that he was sending me to, my doctor kept referring to him as “very fundamental”.  He repeated this term over and over and to this day, I am still not 100% sure exactly what that means.  The closest to an explanation that I got from my Doc was him saying that a young neurologist would just see the MRI report and throw me on MS medicine.  However, the neurologist that he was sending me to was “very fundamental”.  OK.  I guess.

I actually really liked Dr Fundamental.  The concern was that he was approximately 70 years old.  The pro with that is that he was “very fundamental”.  I’m going to relabel that as old school.  There were several cons with this, however.  First, I would hope that my disease  treatment will outlive him.  Second, he had his own issues like canceling one of my appointments because he had to go in for a procedure of his own.  Lastly, were occasional comments like “I’ve prescribed the same medication for MS for the last twenty years”.

Don’t get me wrong.  I think that Dr Fundamental is great.  I would refer anyone seeking a general neurologist to him and I am very thankful of the treatment that he gave me.  That’s a topic for the next post.

What the heck is a demyelinating disease?

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The case of the mysterious tingling leg solved….

My EKG was fine.  My EMG was fine.  A blood test showed that my cholesterol was starting to creep up, but basically it was fine.  I went back to my doctor with the expectation that the MRI that I had just had of my neck would also show that everything was fine.  I expected a continuation of the unsolved mystery of my tingling leg.

Except that it wasn’t fine.  The MRI revealed two problems.  Somehow I had developed arthritis in my neck and the second had to do with my nerve cells.  The doctor said that some of the cells “had changed”.  I wasn’t quite sure what that meant.  He grilled me repeatedly asking  if I had suffered any injury to my neck that could have caused this.  I hadn’t.  The report suggested that I have an MRI performed of my brain as well and I left the doctor’s office to go schedule that.

On my way home, I read the copy of the MRI report.  It made reference to evidence of something called demyelinating disease.  Having no idea what that was, the first thing that I did when I got home was to go online and look it up.  Myelin is a sheath or coating on the nerve cells.  With a demyelinating disease, this myelin is damaged.  It could be caused by a variety of things such as exposure to certain chemicals or genetics.  In the case of MS it is believed that an individual’s own immune system attacks the myelin.  This creates problems because the myelin plays a key role in the conduction of the electrical signals through the nervous system.  Damaged myelin inhibits the flow of the signals and can cause sensations (like my tingling leg), lack of coordination, problems with eyesight and numerous other symptoms.

Now we knew what was causing the tingling leg.  The next step was to figure out what was causing the demyelination and what, if anything, to do about it.  It was back to the imaging center for an MRI of my brain.