My Life With MS

 

My Life With MS.

I am one of the chosen. Somehow, I drew the short straw at age 47.  Two months after a rapid onset of puzzling physical symptoms I was diagnosed with Multiple Sclerosis (MS).

 

The diagnosis followed a series of tests: Since the MRI indicated no lesions in my brain, my neurologist performed a lumbar puncture (LP) commonly known as a spinal tap. The LP results were positive, in that the spinal fluid contained oligoclonal bands, indicating MS.

 

This was back in 1999, and the neurologist who diagnosed me assumed my MS was the common variety known as Relapsing Remitting (RRMS).  About 85% of MS patients suffer from RRMS.  However, my neurologist assumed wrong, which sure brings that old joke to mind: When you assume, you make an ass out of u and me (ass-u-me).

 

RRMS breakout chart.

The odds were with my neurologist, but he got it wrong.

Today, we take the internet for granted.  We expect instant access to all types of information.  Certainly, if I had access to the latest research back then I would never have accepted my doctor’s opinion at face value.

 

I was not completely unarmed.  Even before receiving my official diagnosis, I began amassing a library of books on MS. The first book I purchased was a friend’s recommendation: “The Multiple Sclerosis Diet Book” by Roy Laver Swank and Barbara Brewer Dugan.

 

Dr. Swank began studying the relationship between MS and diet in the 1940’s, beginning at McGill University, and later at Oregon Health Sciences University in Portland.

 

What he said made enough sense I began making drastic changes to my diet. I suppose there is no real way to gauge how much this affected my MS.  However, I DID lose weight, my “bad” cholesterol levels (LDL) plummeted, and my “good” cholesterol levels (HDL) rose.  In other words, by adhering to Dr. Swank’s program, my overall health (with the notable exception of my MS) was far better than it had been.

 

At the time of my original diagnosis, my neurologist prescribed Betaseron, which was the strongest of the injectable interferon medications available. Betaseron was also the first of the injectable DMDs (disease modifying drugs) to have gained FDA approval in the mid-90s.

 

I had no other information on the drug other than what the drug company provided to the doctors and their patients. After a brief training session with a nurse, I bravely launched into a new routine of self-injecting the medication every other day subcutaneously.

 

The list of potential side effects provided by the drug manufacturer was scanty, or at least they were at that time. As a result, I spent the next three years feeling absolutely dreadful for 40 out of every 48 hours. I was trying to be as healthy as possible, but the drug was dragging me down. By the end of the third year, I reached what seemed an inevitable conclusion: It was time to stop treatment. Around the same time, my ongoing research led me to conclude I did NOT have Relapsing Remitting MS!  Sadly, this meant I never should have been on the drug in the first place.

 

Stopping Betaseron brought nearly instantaneous relief to my suffering—by the end of my first “clean” week, certain lost functionality was restored, my side-effects disappeared, and for the first time in years I had hope.

 

Sticking to the diet, getting a daily nap, and getting a lot of exercise stood me in good stead for the next three years, with only minimal progression of my disease. Yet by 2005, I had to use a cane when out in public or walking on rough ground, as I developed a condition known as foot drop—this affected both my gait and stability.

 

Only a small percent suffer from PPMS.

I finally figured out I have Primary Progressive MS.

As a result of my ongoing research, I concluded I had PPMS (Primary Progressive MS). With PPMS the patient experiences no distinct exacerbations, yet does experience a steady progression of the disease.  The progression manifests by gradual loss of motor function.

 

Since less than 15% of MS patients have the more serious Primary Progressive, very little research has been done on it. Even less action has come from the pharmaceutical industry, since a small group of patients is not going to generate a sufficient return on any drug development investment.

 

My neurologist never officially changed my diagnosis to PPMS.  However, in April 2005, he did convince me to try the only treatment approved for progressive forms of MS—a chemotherapy regimen called Novantrone.  Novantrone had proved successful at stopping progression in a certain percentage of MS patients.

 

Chemotherapy seemed a nasty last resort, but I had spoken with a few others like me who had enjoyed success. I opted in, reasoning that I could try a few infusions before fully committing. After an ECHO scan showed healthy heart function, I began my regimen.  The infusions are given every 3 months, until a maximum lifetime dose of 8 is reached.  The result: I had one VERY good day one week after infusion #1, otherwise NO change.

My Life With MS By Connie Nichols

Here I am with my dog Speck.

 

Unfortunately, the summer 2005 was fraught with a lot of turmoil for me, and the type of stress it created is highly damaging for a person with MS. In retrospect, it’s clear that my stress overload, coupled with the fact I was experiencing the final stages of menopause, significantly accelerated the progression of my disease.

 

With most any serious chronic illness a certain amount of set back and bad news is inevitable. Yet in order to battle on, one must be vigilant in searching for new information, figuring out ways to adapt to changing physical demands, and above all, maintain a sense of humor.  Perhaps more important is to find people who have been through it and truly get your pain. In my next installment, I plan to continue talking about some of the issues and things I have learned.  My hope is by sharing this information those like me will find some measure of comfort and realize the journey ahead is not one they need to face alone.

 

Please feel free to share your experiences and comments below.

 

For more information on my disease and how I’ve been able to cope, read, “Multiple Sclerosis: No Whining I’m Grateful.”

 

By Connie Nichols
© 2011 Javabird LLC.  All rights reserved.

 

Resources:

• National Institute of Health – Multiple Sclerosis: MedlinePlus
• About.com – Diagnosis of Multiple Sclerosis
• WebMD.com – What is Magnetic Resonance Imaging
• Mult-Sclerosis.org – Oligoclonal Banding – Multiple Sclerosis
• WebMD.com – Mutiple Sclerosis Spinal Tap Test
• NationalMSSociety.org – What We Know About Relapsing Remitting MS (RRMS)
• SwankMSDiet.org – The Swank MS Foundation
• WebMD.com – High Cholesterol – Overview
• Drugs.com – Betaseron
• MSRK.CO.UK – Disease Modifying Drugs
• Wikipedia – Foot Drop
• NationalMSSociety.org – Novatrone (mitoxantrone)
• NationalMSSociety.org – What We Know About Primary Progressive MS (PPMS)

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