Monthly Archives: December 2013

My first experience with Tai Chi and MS

Having multiple sclerosis can be a humbling experience in many ways.  We all hit points where we can no longer do physical things that we used to do with ease.  When you have MS, you hit these points much sooner in your life than you would have anticipated.

When I was younger I very much enjoyed martial arts.  Most of my exposure was to Chinese martial arts.  But like many, when the mixed martial arts craze took off I also tried my hand at  jui-jistsu and muay thai.  Even with the Chinese martial arts, I always preferred the real thing to gymnastic dancing.  That means strapping on the gloves and putting in the mouthpiece for full contact sparring and kick boxing.

If I had any doubt that those days are behind me, being diagnosed with multiple sclerosis did a good job of convincing me.

Twice in my past I had northern shaolin teachers that insisted that we learn a little tai chi.  At the time, I really had no interest in it.  While tai chi can be a serious martial art for a skilled practitioner, I think that the individuals that can actually use it to fight are few and far between.  Tai chi was for senior citizens to do in the park early mornings.

MS is causing me to reconsider the benefits of learning tai chi.  Regardless of whether you believe in chi and that exercise can help you cultivate it, tai chi definitely requires you to practice your balance and your coordination of movement.  If my immune system is eating away at my myelin, it only makes sense that training my ever changing nervous system to try and overcome that to force the signals through can only help.  If nothing else, I doubt that it would hurt anything.

But hanging out with the grandmas early in the morning in the park?  That’s just not me.  Except that MS is telling me that it has to be.

I went online and found a few tai chi schools in the area and decided to check one out for a free trial class.  First off, when I arrived at the location I realized that it was at a dance studio.  I guess that is no big deal but just plays right in with the rest of my struggle to accept that my kick boxing days are long gone.

I got there early.  Two students were there warming up.  Both women, probably in their 70s.    I closed my eyes and just remembered the feeling of things like delivering a great combination to knock my opponent flat on his back.  So much has changed in just a few years.

More students arrived.  All women.  Ranging in age from approximately 60 to 90+.  I swallowed my pride and fought to suppress my ego.

In the end there were about 16 students.  Besides myself, two were males.  One was about my age.  Everyone else was 60+.  But maybe the most humbling thing of all was not my new martial arts classmates.  It was that I really had a tough time doing some of the movements.  Balancing on one foot while moving slowly has become more difficult for me.  I know that I shouldn’t complain; many people with ms are in wheelchairs.  But it’s all relative and it was eye opening to me to see how my balance has been affected.

The difficulty of it also convinced me of the potential benefit.  I am going to try another school after the holidays and see if it is a crowd that I can relate to a little better.  As I continue my tai chi journey, I will add updates as to how it is helping my ms or not.  If other readers have experience with it, please feel free to post or contact me.

Thanks for reading and Happy Holidays!

R is for Rebif. And Rash!

I started on Rebif for my multiple sclerosis almost three months ago.  Rebif is a three times a week injection that you give yourself.  The most common side effects are flu like symptoms and irritation at the injection sites.  I experienced neither.

The first two weeks were fine.  Initially you begin with a one fifth dosage.  The next two weeks they move you up to a half dose and I was still fine.  The fifth week I stepped up to the full dose and that’s when the reaction began.

Within a day of dialing up to the full dose I began to have a small but itchy rash on my chest.  I had been on a business trip and assumed that it might be from the hotel bed.  I could have been sensitive to the detergent that they used or it could even have been bed bugs.  If so, I would expect it to fade away with a little hydrocortisone cream.  However, it did not get any better.

I had read that with some other MS medications people may experience flushing or rashes, but that this often goes away after the first month or two.  I was hoping that this wold be the case too.  I called MS Lifelines, which is essentially a customer service help line staffed with nurses that is run by the pharmaceutical company.  They looked it up and could only tell me that in trials, 5% of the subjects developed rashes.  They couldn’t tell me anything further such as if it normally goes away over time.

I had an appointment with my MS doctor coming up so I stayed on the Rebif and waited to bring it to her attention.  By that time, it had spread a little and was still itchy, but more or less tolerable.

MS Doc didn’t think that it was anything serious but that tolerable or not, I shouldn’t have to go through life itching if I don’t have to.  She suggested stepping back to the half dose for a month to let the rash clear up.  Then we would slowly go back to the full dose in hopes that my body would have adjusted by then.

It didn’t work.  A month later, the rash not only didn’t go away, it has gotten worse.  It now covers most of my upper body and has moved from tolerable, well into the annoying camp.  We now have the following action plan:

  • Stop taking the Rebif.
  • See my primary care physician to see if I can get anything to help clear up the rash.
  • Give some blood again.
  • Pick a new treatment.

The blood test is needed because my last test a month earlier showed elevated liver enzymes.  This may be a result of taking the Rebif, but we want to be sure before we decide which treatment to try next.

Giving myself the injections was not as bad as I had feared.  That having been said, I am really hoping that the next one that we try is a pill!

How to give yourself a Rebif injection

Rebif is a popular disease modifying drug used to treat remitting – relapsing multiple sclerosis.  It is injected sub-cutaneously (into the fat layer just beneath the skin) three times a week.

I had mixed feelings when I started on Rebif.  On the one hand, I was not at all enthusiastic about giving myself shots.  On the other hand, I felt like I was finally doing something to treat my condition.

For people who may be considering Rebif treatment, I thought that I would share what exactly is involved with taking the medication.

First of all, It’s really not that bad.  Really.  It only takes a few minutes, three times a week and you quickly get used to it.  When you first start, MS Lifelines, aka the pharmaceutical company, sends out a nurse to your home to coach you on how to do the injections.  You will rotate injection sites between your abdomen, thigh, upper arm and lower back/buttocks.  Within each of these you will also rotate between six spots on both the left and right sides each for a total of 48 injection spots.  At three times a week, you will go four months before repeating specific locations.

The first two weeks you will do a dose that is approximately a fifth of the full dose.  The following two weeks you will move up to half doses before taking on the full doses starting in the fifth week.  It’s helpful to pull out the pre-filled syringe out of the refrigerator several hours in advance to allow it to warm up to room temperature.  Supposedly this reduces injection site reactions.  I haven’t had any so it probably does help.  The syringes can be kept at room temperature for up to 30 days.  Some people take out a week’s worth at a time.  I just always keep the next dose in my sock drawer.  When I inject one, I pull another out of the fridge to replace it.

Step one:  Wipe the site with an alcohol wipe and let dry.

Step two:  I use the Rebiject injection tool.  It’s about the size of a large banana and if you fear needles, it’s a must.  You never see the needle until after you are all done.  Cock the spring loading mechanism in the Rebiject.  Insert the pre-filled syringe with the cap still on it into the hole and screw the two pieces of the Rebiject together.  Pull off the plastic tube on the end which removes the syringe cap and you are ready to go.

Step three:  Press the end of the tool against the chosen injection site and push the button.  The tool sticks the syringe into you and squeezes out the dose without you ever seeing it.  Wait a few seconds and pull away the Rebiject.

Step four:  Massage the injection site for two minutes to help distribute the medication.  I put a sterile gauze pad over it and rub gently, but you could use your hand if it is clean.

Step five:  Unscrew the Rebiject and dispose of the needle in your sharps container.  They give you two containers with a prepaid addressed box to send a full one back.  When you do, they send you a replacement.

When you first start, a common side effect is flu like symptoms.  They recommend that you take advil before your dose and shoot up at night.  That way if you do suffer the flu symptoms, you will likely sleep through it.

I was lucky and did not have flu symptoms or issues at the injection sites.  I did, however, have a different and less common side effect.  That will be the subject for the next post.

Give myself a shot? Really?

Now that the diagnosis of multiple sclerosis was made, it was time to talk about what to do about it.

There are two ways of using medications to treat MS.  The first would be taking something, steroids is an example, that would address the symptoms that you were suffering.  Since I had hardly any symptoms, this wasn’t something that I needed to consider.  At least not yet.  The second group are what are called disease modifying drugs, also known as DMDs.

The idea of DMDs is to slow down the progression of the disease.  Unfortunately none of them halt it completely.  They also don’t work the same on all people.  There are the lucky few who might find a drug that slows it down so much that it does effectively halt it.  Other’s may find that no drug slows it’s progression down at all.  Obviously, I hope that I will be in the former group, but only time will tell.

My doctor explained that there are about a dozen drugs currently approved with a variety of results and side effects associated with them.  For someone in my circumstances she had three that she used as baseline treatments.  I had done a little research before and knew that some of the newer drugs were taken as pills.  I told her to give her best recommendation for me and I would go with it, hoping that it would be a pill.

It wasn’t.

My doctor recommended Rebif.  I will go into more detail in another post, but basically it involves giving yourself a subcutaneous injection three times a week.  She said that it has a very long safety profile and that with any luck, it may be the only medication that I will need.

But give myself a shot?  Having someone else do it is bad enough.  I just couldn’t imagine having to stick a needle into myself.

In actuality it isn’t really that bad (more to come on this).  And for the first time at least I felt like I was doing something for my disease.  It was the most empowered that I had felt in a long time.

At a later appointment I asked doc why she went with Rebif instead of Tecfidera, which is a new popular pill?  She replied that treating MS is a marathon.  At some point we may have to switch medications.  When that time comes, it is much easier to switch a patient from an injection to a pill than the other way around.  I couldn’t disagree with that.

My new MS doctor – and finally, a diagnosis

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….

Getting a second opinion

Things seemed to be stalling with Doc Fundamental.  I had been seeing him for almost six months and he still hadn’t made a determination as to what the cause of my tingling leg was, much less start a treatment plan.  Even my primary care physician expressed a little concern.  “I know that you don’t have many symptoms today, but we want to keep it that way”.

Doc F was just being conservative and cautious, not wanting to misdiagnose me as having multiple sclerosis if indeed I didn’t.  It was a murky mixed picture.  My MRI reports were bad and said that it looked like MS.  Yet, I had virtually no symptoms.  My blood tests came back mixed and confusing.  Doc F admitted “I don’t know what to make of them”.  My spinal tap showed evidence of the antibodies that they test for to show evidence of MS.  But even then, the readings were not that far out of normal.

Thankfully, despite his many decades of experience (or maybe because of them), Doc Fundamental did not have a big ego.  He admitted that he was not confident in the assessment and suggested that I get a second opinion.

I live in a major metropolitan area.  That has it’s pros and cons.  One benefit is that there is an abundance of excellent healthcare options.  In my city, there are two very well known MS neurologists.  Both have been published countless times and received many awards and recognition for their research in multiple sclerosis.  Doc F suggested going right to the creme of the crop and seek a second opinion from one of these two; Famous Doc A or Famous Doc B.  He said that it was a coin toss.  He would would rank them #1 and #1.  As I was reaching into my pocket for a coin to determine it, he said that maybe we should try Famous Doc B first, because A has been on the lecture circuit a lot recently and I might be able to get in to see B sooner.

Doc F sent off my file and a writeup requesting that Famous Doc B see me for second opinion appointment.  It took a week and a half for them to decide, but they finally got back to me that she would see me.

I was very excited!  Finally, moving forward again.  Well, sort of.  The soonest that I could get an appointment was going to be four months away.  I can only imagine how long it would have taken to get in to see Famous Doc A.

Vaudeville ophthalmology – Frustrated stand up comedians should not be eye doctors.

This blog will be balanced but positive in it’s tone.  This post is the exception.  We all are allowed the occasional rant.

Thanks to moving, my disease and having kids, we have had to seek referrals to medical practitioners many times over the last few years.  Almost all have been excellent.  One was not.

Vision issues are a common manifestation of multiple sclerosis.  During the process of trying to determine what was causing the tingling in my leg, my primary care physician referred me to several other professionals.  To check my vision for possible MS, he sent me to an ophthalmologist a few floors up in his building.  We will call him Oph.

I wasn’t having any unusual issues with my vision but I knew that I needed new reading glasses anyway so this might be an opportunity to kill two birds with one stone.

First off, Oph is a glaucoma doctor.  But that didn’t stop him and my primary from deciding to have him check me out for signs of MS.  I went for my appointment and waited 45 minutes before being brought in for an exam by an assistant.  I noticed that the equipment all looked like it was from the 1950s.  Then I was moved off into another room with eight other patients to wait for the doctor to make a presentation.

For the next twenty minutes, a son of a glaucoma patient asked me in as many different ways that he could think of, why I was there.  I matched each iteration with my own modifications of “it’s none of your business”.  One poor guy in the room wasn’t even a patient.  He had given his friend a ride to the office and the nurses grabbed him and shepherded him in with us.

Then Oph showed up.  He explained that he started having the patients sit through his presentation a few years ago because it saved time.  Otherwise, he would have to give the same talk individually for each.  I was starting to get annoyed.

His half hour presentation was on the basics of the eyeball and glaucoma.  The former I learned in junior high school.  The latter was of no interest to me.  The speech was a very well rehearsed and scripted barrage of non-stop eye jokes and glaucoma trivia.  For example, I learned that cataracts means waterfalls in latin.  Or maybe it was Greek.  Whatever.  Every other sentence was a statement repeating the theme that he was an MD and optometrists are just guys who sell eyeglasses.  Anyway, he was clearly having the time of his life performing for us.

Mind you, this was in the middle of the work day.  My cell was buzzing non-stop during his act.  At one point, I was getting so annoyed with the waste of my time that I turned the ringer back on just so he could realize that some of us might be busy with other things too.

After the comedy show, I was moved back into an examination room.  Oph walked in just in time to hear me on the phone complaining to my assistant that I had been there two hours already and had not yet seen the eye doctor and to please push back a meeting and two conference calls that I was clearly going to be late for.  Oph started his exam with his antiquated equipment.

My eyes checked out fine.  No signs of neurological issues.  Oph then decides to try his hand at diagnosing ms.  Me in a chair, him standing next to me, he snapped my head back quickly.  He said that you tell if someone has MS by doing this and seeing if their eyes flutter.  What??  Are we done?  No offense, but I will trust my neurologist and MRIs to figure that out.

Actually no.  The second part of the exam was going to take another hour or more.  He had heard my phone call and asked if I needed to come back another time to finish it?  Yes.  I made a point to mention that I really needed new eyeglasses for reading and that he could help me with that next time as well, just to set him off on his “I’m an MD and they aren’t, and doing eyeglasses is beneath me” script again.

I came back for my follow up appointment the next week.  Luckily they did not make me sit through a rerun of the comedy act this time.  One of his assistants had me do more tests and let me know that everything checked out fine.

Then she looked at the chart and said “Didn’t the doctor dilate your eyes the other day?”  No, he hadn’t.  “Ok, he still needs to do that then”.  Ok, let’s do it.  “Well, the doctor isn’t here today.  He doesn’t work Wednesdays.”

What???  First they had me waste three hours in the middle of the work day and then they schedule me for a follow up appointment on a day when the doctor doesn’t even work?  The assistant said that I would need to schedule another appointment to come back.  This is on top of having to do another appointment with an optometrist because writing eyeglass prescriptions is beneath him.  An eye exam should not take four appointments.

I went on yelp and found a great optometrist.  Yes, he is not an MD.  But he had modern computerized equipment that I personally had more confidence in than I did in Oph.  And he did what I needed in one session.  I never went back for part 3 of my exam with Oph.  I did let my primary care Dr know about the experience.

A word of advice to Oph or any other doctors with a similar m.o.  If you are doing something  solely because it saves you time and effort, you are putting your concerns ahead of your patients. That’s not what we pay you for.  Please respect our time as well and understand that we come to you for personalized advice and care that is relevant to our situation.  And if you are a frustrated comedian, express it on stage during amateur night at the local comedy club.  Don’t force your patients to be your audience, especially businessmen during a workday.

To be a pincushion or not? – Acupuncture and MS

Skeptical, I was.  To say the least.  But my wife kept insisting.

Understand that my wife’s opinion comes with a great deal of credibility.  Without giving up too much personal information, I will share that she is a research scientist with a phd.  If you knew her resume, you would expect her to be the last person to believe that something like acupuncture would work.  But, she does.

My wife has seen acupuncturists for years.  She will be the first to tell you that the vast majority of them are bs and ineffective.  However, she feels very strongly that if you can find one of the few that are the real deal, it works very well.

Ann Romney has gotten press that she treats her MS with acupuncture, reflexology and horse back riding.  One survey that I saw said that 25% of people with MS try acupuncture.  I am still not so sure about it.

While I wasn’t about to consult any type of alternative practitioner with something as important as my possible MS, I finally agreed to give it a shot with something less critical.  I occasionally suffer from a sore back like many men my age.  Would sticking needles in me actually help that?  I doubted it.  But I was willing to try it to make my wife happy.

I went to the acupuncturist a few times.  I regret to say that it didn’t really help my back.  Coincidentally though, my tingling leg stopped tingling for a number of days after each visit!  I asked my neurologist if this was possible, could acupuncture actually work?  His response was that sometimes the brain works in mysterious ways.  He has had patients that he felt would not be prone to suggestibility at all, that found acupuncture very effective.  Others found that it did nothing.  No one really has proof as to why it works, when it works.

Acupuncturists believe that an energy or life force called chi flows through the body along paths called meridians.  If there is blockage, the chi will not flow smoothly and a person can experience illness and other problems.  By stimulating specific spots with the needles, the blockages can be released, returning free flow of the chi.

I am not buying it.  I think that our understanding of biology has progressed well beyond that philosophy.  That having been said, the needles did have an effect on my tingling, placebo or otherwise.

The bottom line is that my jury is still out regarding the benefits of acupuncture for treating multiple sclerosis.  I don’t believe that it can stop your immune system from attacking your myelin.  I do believe that it has the potential of helping  someone manage their symptoms.  More to follow as I am sure that I will try it again in the future.