My Multiple Sclerosis Life Story, Part Three : Gilenya benefits and My first Baclofin Pump

Gilenya and root canals on my teeth

To this day, I am still taking Gilenya.  It has had significant benefits to me, as I say, from the neck up.  Prior to taking Gilenya in 2007, I had one root canal after another.  I have had no root canals on any of my teeth since then.  When I do have an extraction, it is not because of a root canal issue.  It is because I cracked the tooth.  Root canals are a nerve issue, I have had none since 2007.  Prior to taking Gilenya, I have had none to this day.

Carrying a computer

In 2005, I was carrying a computer and I tripped.  I was bleeding from my chin, and I had to go to the hospital to get stitches.  I also got a herniated cervical disc.  This certainly hurt.  Gilenya is also an anti-inflammatory drug.  After taking Gilenya, my neck has felt much better.

Allergies

I have allergies.  I have environmental allergies.  I am allergic to grass, trees, dust, mold, ragweed (I have hay fever, especially Spring hay fever), and sycamore.  After taking Gilenya, my allergies have improved.  I had been taking allergy injections for years.  I am still affected by allergies, but much less so, and I no longer take allergy injections.

What about dizziness?

As a result of my Multiple Sclerosis, I would have dizziness.  After taking Gilenya, my dizziness is gone.

Flu like symptoms

I no longer have flu like symptoms, but this I attribute to stopping the Betaseron.

My vision improves

About 10 minutes after starting Gilenya, my vision had improved.  It has continued to improve to the point where my optometrist has had to lower my eyeglass prescription.  However, I still wear glasses, but the prescription is significantly lower.  No more Coke bottle glasses.

Gilenya gives me 2 1/4 years of walking to work

I was about to stop walking in 2007, but Gilenya gave me another 2 1/4 years of walking to work, before I was forced to retire by Multiple Sclerosis.  Gilenya still works great from the neck up.

How to improve

Anyway, by the end of 2011, I was looking for a way to try to improve.  I spoke to my neurologist and he suggested a Baclofen Pump.  Baclofen is a muscle relaxer, but when I take it orally I have had very bad side effects.  I would get headaches and dizziness, and I was a mess.  However, with a pump, the medicine is delivered directly into the spine, with, in my case, no side effects.

It sounded good

This sounded like a good idea and in January and February of 2012, I began to set up the surgery that was need for the installation of a Baclofen Pump.  This would entail incisions in the front and back.  In the right front, the pump would be placed, and in the back, a catheter would be run up my spine to deliver the medicine.

The doctor’s new job

My doctor, apparently had plans to take a new job in New York City.  I followed him into the city, and had the surgery performed in the city.

Successful operation

I had the operation on March 5, 2012.  A representative from the pump manufacturer was present at my operation.  The operation was successful.  The next day, I was awoken, given two Percocets, two aides stood me up, and I was told that I could leave.  Boy, was I groggy after the operation and two Percocets.

The $1,000 ambulance ride

Anyway, I was loaded into an ambulance and taken to Glen Cove on Long Island.  Only later would I learn that this ambulance trip would cost me $1,000.  I would only stay at this hospital for two weeks, at which time the staples from the operation were removed by the doctor.

The problem

Here was my problem.  My neurologist was not admitted to Glen Cove Hospital.  Very few doctors were qualified at the time to regulate the pump.  It is regulated by remote control by the doctor.   The pump cannot be regulated by the patient.   The only doctor I could find to regulate the pump at this facility, hated Gilenya.   Gilenya affected the immune system.  The doctor believed I would get some terrible illness because my immune system was suppressed by Gilenya.  However, the drug company that makes Gilenya tested for this, and found that not to be the case.  I was part of the clinical study that got Gilenya approved by the FDA.  My medical records were sent to the FDA.  Based on my (and others’) medical records the FDA approved Gilenya.  This was not enough for this doctor, and I was taken off Gilenya.

No Multiple Sclerosis medicine

I was given Cellcept, which caused bad side effects, and so I was on no Multiple Sclerosis medicine.  All my pre-Gilenya problems returned.  But I toughed it out.

Medicare will only pay for 100 days

After the two week stay in Glen Cove, I spent about 100 days recovering in a nursing home.  Apparently, Medicare will only pay for 100 days.  After 100 days, I was returned home.

How did it work for me

I wish I could say I had great results from the surgery.  While the surgery was a success, I only had small gains from it.  My Clonis (shaking of my legs) improved (lessened), it did not go away completely.  The Baclofen relaxed my muscles, but did not give me any added strength.  I had less spacity, and could sit up better, but I had little trunk support, and was prone to falling over sideways.  I would have to work on this.

Return to my regular neurologist

Shortly thereafter, I returned to my regular neurologist, who put me back on Gilenya.  This required another 6 hour adjustment period, but it was well worth it to get back on the Multiple Sclerosis medicine.  All the benefits of Gilenya returned.

My Multiple Sclerosis Story, Part Two : Betaseron complications and Gilenya study


The Story Continues

I left off after I was diagnosed with Multiple Sclerosis, and I was prescribed Betaseron.  But my journey with Multiple Sclerosis did not end there.

Betaseron injections

Betaseron is one of the ABC drugs.  These drugs are injected into the arms, legs, and stomach.  The injection site is rotated so that no one site repeatedly gets the shot.  I continued to do this from 2003 to the end of 2006.

It’s all over, maybe

At this point, I felt as though it was all over for me.  I could no longer continue.  I would have to quit my job at the New York City Law Department’s Tort Division.  It was not uncommon for someone on Betaseron to suffer from Flu like symptoms.  This is a side effect of Betaseron and many of the ABC drugs.  Multiple Sclerosis and the MS drug had gotten the best of me.

Misery & Me

I did what I usually do when I’m that miserable, I research my way out of it.

Fingolimod

I found a drug called fingolimod.  It was a pill that you took once a day.  It was for relapsing remitting Multiple Sclerosis.

Conference

I went to my neurologist and I spoke to him about the drug.  This was still the end of 2006.  He told me that he had gone to a conference and they had talked about it.  I was elated.  He knew about this drug.  He gave me information about the drug that he got at the conference.

Prescription, please

But my elation was short lived, because the I asked the key question –  could he write me a prescription for the drug.  He said incredulously, “A prescription, it’s an experiment!”  He could not write a prescription, the drug was not even approved by the Federal Food and Drug Administration (FDA).  I thanked him and left the office despondent, but I had the materials he gave me from the conference that he had attended.

I decided not to go to Japan

I decided to continue my research.  I found a place in Japan which was conducting a clinical study on the drug.  I don’t know how to speak Japanese.  I do not want to move to Japan, and if I did, would I even be accepted into the Japanese study?  I decided to keep looking.  My efforts were shortly thereafter rewarded.  I found a place in Plainview, NY that was part of the Novartis study for fingolimod.  I was elated.  I called my neurologist and told him.  He asked me where and I told him.  He said he also had other patients who might be interested in the clinical study.

I stop Betaseron

I called the office in Plainview and I was told to stop taking Betaseron.  I could not be in the study for fingolimod and be on Betaseron

at the same time.  I would have to be off Betaseron for at least 3 months before I could be in the study.

I become a guinea pig

I went to the Plainview office and I was questioned and after looking at my records, I was told I could be part of the study.  The study was in phase three.  In all fairness, I had been following a Blog called Fingolimod & Me.  As far as I know this blog is no longer updated.  However, I owe much to this blog because it gave me great insight into what I was getting myself into.  I was about to become a guinea pig.  I was doing this not only for me, but all of the Multiple Sclerosis world.

Time to wait

It began in a room.  I had to sit there for 6 hours.  The pill I was taking was either a placebo, .5 mg, or 1.25 mg.  It was an FDA approved study and they apparently weren’t even sure about the dosage. I took the pill, and about ten minutes later I started to see better.  There were flyers on the door to the room I was in, and I noticed that I was able to see and read them better.  I mentioned this to one of the doctors who did not seem to give this much concern or credence.  After 6 hours, I would be allowed to leave.  The time came, and I was ready to leave.  I was told there was no way I was going to leave now.  Apparently, my heart rate had slowed significantly and it was time for an EKG.  Thereafter, they continued to monitor my heart.  Eventually, it leveled off and I was allowed to leave.

Many doctors and tests

Thereafter, I was given a list of doctors to go to.  The doctors were part of the study and I got the impression from the doctors on the list that there was only so much they could tell me.  Novartis, the drug company, would pay for the doctors.  It was a variety of pulmonary doctors, dermatologists, MRI’s, and ophthalmologists who I would visit, as well as testing by the neurologist.

Placebo, maybe

I did not know whether I was receiving the drug or a placebo.  I did not know what dosage I was getting, .5 mg or 1.25 mg.

The approved dosage

Later, after the study was completed, I would learn that I was on the later FDA approved dosage of .5 mg.  No one originally told me, but after my eyesight improved about 10 minutes after I began taking the drug, I had suspected that I was getting the real drug, and not the placebo.  At the time, I did not know what dosage I was taking.

The drug gets approved

I later continued with the extended study for another two years.  On September 10, 2010, the FDA approved the drug.  However it was no longer to be called fingolimod, it would now be known as Gilenya.  In time, I learned that 14 Multiple Sclerosis drugs were in testing that year but only one, Gilenya was approved by the FDA.

I continued to work

I continued to work for another two years hobbling around Manhattan.  I have continued to take Gilenya except for one time, since then, but that’s a story for another time.

If you have any questions or comments, please feel free to leave your comments below.

My Multiple Sclerosis Story Begins : The Diagnosis

Doctor
Doctor

My Multiple Sclerosis Story – The Beginning

My Multiple Sclerosis life story began in 1977, even though I did not know it at the time.  Only years later after consulting with my neurologist did I begin to realize the pieces of my Multiple Sclerosis story.

Weakness holding a cup

I was in law school and I began to notice that I was having difficulty holding a cup. I had difficulty holding a cup of coffee, a cup of water, a cup of soup and so on.  I noticed this with my right hand.  I am right handed and usually pick things up with my right hand.

The nervous twitch is everywhere

I noticed that this was odd, but I was not that concerned about it.  I went to class and I looked around my law school class.  I wanted to see if anyone had a similar problem.  Virtually everyone in the class had a nervous twitch of some kind.  This was not unusual for a law school class.

The weakness subsided

I did not think much of it and I went about my life.  The weakness in the right hand subsided in a couple of weeks and I just continued with my life normally.  I really did not focus on the issue and after a couple of weeks all was well.

The cloud arrives

My life went merrily along until on Saturday in 1985.  I awoke with a cloud in my right eye.  I could barely see through the cloud.  It did not cover the entire field of vision, but it obstructed about 1/3 of the field of vision.  I continued doing things that day and went to the Bay Shore Shopping Mall on the south shore of Long Island, NY.

I still see the cloud

I still had the cloud in my right eye and it was a sunny day.  I was hoping it would go away, but it did not.  I was thinking maybe I slept on the wrong side of my bed and I must have leaned on something.  Anyway, by the afternoon, I was beginning to think that someone who knew something about eyes should take a look at my right eye.

What to do in a shopping mall?

I was still in the shopping mall.  I looked up.  I saw Cohen’s Fashion Optical.  I went into the eyeglass store and I asked to see the optometrist.  A Dr. Corbin came out to see me.  He took a look at my eye.  Then he took me to his office in the back.  He looked more.  He kept looking, but he could not find anything.  He seemed frustrated. He kept looking, but could not find anything.

Time to see an ophthalmologist

He finally said that he knew an ophthalmologist that might still be available on a Saturday.  He sent me to Dr. Bruce Mazure in Woodmere, NY.  Dr. Mazure apparently had a new device.  It looked like a white mini satellite tv dish.  It had little points of light that came out of the device.

Optic neuritis

Dr. Mazure concluded after the testing and often looking at my eye that I had optic neuritis.  I had what?  Yes, he said he believed that I had optic neuritis.  Really, it is apparently an inflammation of the optic nerve.  I remember walking out of the office with Dr. Mazure, he apparently had a place to go and I walked outside with him to his car.  I was his last patient on that Saturday.  We continued to talk about optic neuritis.  Then we left.

Studying up about optic neuritis

I went home and told my parents, who also knew nothing about optic neuritis.  I began studying up on everything I could get about optic neuritis.  However, this was 1985 and there was not much known about optic neuritis.

Detached retina?

I went to many ophthalmologists after that and I was told that I had a detached retina. Who was right? Meanwhile, the problem was slowly improving, and became increasingly difficult to detect.

My first neurologist

I even went to a neurologist associated with North Shore University Hospital, who raised the specter of Multiple Sclerosis.  He said it could be many things.  What was this and how could we detect this.  Well, we couldn’t.  It was 1985 and there was no effective test.  We could do an epidural, but even that would not be conclusive.  Besides it was 1985 and epidurals had mortality rates at that time.  He said to just continue living your life.  There would be no confirmation of Multiple Sclerosis at that time.

Studying up on Multiple Sclerosis

I went home.  I studied up on everything I could get on Multiple Sclerosis.  I was a lawyer.  This is what I do when I have an issue.  However, again I was not coming up with much.  It is an inflammation of the nerves.  It was 1985, and even if they could confirm it, which they couldn’t, there was no cure and no effective treatment.

Optic neuritis disappears

Life went on and the optic neuritis almost completely vanished and my life continued happily along.

The limp begins

Until, 2003 came.  It was Presidents’ Day 2003 and I began to limp with my right leg.  I went to Dr. Schlesinger who was a neurologist.  He is no longer practicing.  He sent me for an MRI of the brain with and without contrast.

MRI shows Multiple Sclerosis brain lesions

When I returned to his office, he gave me the news.  I had Multiple Sclerosis.  He showed me the MRI results with multiple MS lesions.  I told him about my story of weakness in the right hand.  The difficulty I had holding a cup in law school.  I told him about the optic neuritis or detached retina.  He said I probably had Multiple Sclerosis for more than 20 years.

Finally there is a treatment

I left his office with a prescription for Betaseron.  It is given by injection.  I would have to inject it myself. This would be the beginning of years of treatment for recurring remitting Multiple Sclerosis.

Comments

If you have any questions or comments please fell free to leave your comments below.