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Having a cold on Gilenya, or pressing on the gas and brake at the same time.

My preschooler came home the other day with a respiratory virus, as they often do at that age.  I have now been on Gilenya for a month so it would be a good test of how my body could handle it given that 80% of my lymphocytes are imprisoned in my lymph nodes.

At first it seemed that I had dodged a bullet.  I was the only one in the family to have not contracted it from our little one.  And then it hit me.  Hard.

It’s the sickest that I have been in a while.  For days, I just laid in bed, coughing up a lung.  I was so weak that it greatly affected my MS.  Usually, I can still walk ok; just a little wobbly.  On day two of the bug, my left leg stiffened completely and I lost control of it.  I couldn’t walk.  I could barely stand.

Luckily in the days since it peaked, my walking is slowly returning to normal(ish).  However, it got me thinking……     As we were chugging airborne, gobbling down vitamin C gummies and sucking on zinc lozenges, all of which are supposed to aid our immune system, I was simultaneously taking another drug to intentionally suppress mine.  It is a lot like pressing on the gas while standing on the brake pedal with your other foot.

Time for a new drug. Next stop, Gilenya!










To Ampyra or not to Ampyra?













Pincushion Part 2, Acupuncture and MS

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.

Okay. Maybe it’s not PPMS after all.





Is it Progressive MS?

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.


Four Flavors of Multiple Sclerosis

MS comes in four varieties.

By far the most common is called Relapsing-remitting MS (RRMS). Approximately 85% of people with MS have this type. It’s main characteristic is that the individual has symptoms that come and go.  After a flare-up or exacerbation of a symptom, the symptom will partially or completely go away.  Early on, this gives many people false hope that the disease has passed them by.  Unfortunately, the symptom or new ones will eventually come back.

Most people with RRMS eventually progress to Secondary-progressive MS (SPMS).  The individual’s symptoms may have remitted and relapsed for 10 or 15 years, but reached a point where they stopped going away. Typically from this point on, the symptom or symptoms gradually get worse going forward.

The third type is Primary Progressive MS (PPMS).  With this version the patient does not have distinguishable flare-ups, nor do their symptoms ever go away.  There is just a steady progression of the disability.

The fourth type is also the least common.  Progressive-relapsing MS (PRMS) is characterized by steady deterioration as in PPMS, but with occasional flare-ups on top of it.  The flare-ups may or may not improve, but the basic disability underlying it continually progresses.

There are a few common differences between RRMS and PPMS.  That will be the topic of my next post as we try to determine which variant I have and the path of my treatment.

Surviving Golf with Secret MS







A Sober Drunk or drinking Red Bull and Vodkas

A sober drunk is probably the most common description that I have seen used by someone with MS explaining what it is like to have the disease.  I think that it is fairly accurate.  In fact, in my very first post I talked about how I distinctly remember the first time that I noticed something wasn’t right.  I was walking down a city street with colleagues and felt almost like I had been drinking, but I hadn’t.

With MS you can be completely sober, yet unsteady on your feet.  As you walk across a room, you might bump into chairs or at least place your hand on the backs to steady yourself.  You will bump into walls or guide yourself along them.  Going up or down steps, you will hold onto the rail for support.  You will find it difficult to walk in a straight line or to stand still without wobbling a little, especially with your eyes closed.  In other words, you have the same balance and coordination issues that you experience when drunk.  Except that you are not.

Red Bull and vodka has become a popular, if not dangerous, cocktail.  Why is it dangerous?  Because you don’t notice when you are getting drunk and that can easily lead to over-drinking.  Typically when you drink alcohol, you feel tired.  The energy drink offsets this.  If you are sitting down drinking red bull vodkas, you will feel alert and energetic; almost sober.  Until you stand up to go to the restroom and realize that you can’t walk a straight line as you stumble across the room.  Having MS is a lot like that.  Sitting there you will feel just as normal as you always did; until you get up.

And of course, you can’t just drink some water, take an aspirin and sleep it off.

When I first lied about my MS






So I lied.



