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.

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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.

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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.