Monday, March 07, 2005


Last of June 1971 I woke up and could only see items with peripheral vision in my left eye. I made an appointment with the eye doctor, he put me on prednisone. After a couple of weeks when wasn't better, referred to a neurologist in Tulsa. This doctor ran some tests because I had taken a bad fall down some steps while on vacation the first part of June and landed on my head. In about 6 weeks, sight was back to normal except for color brightness. Diagnosis optic neuritis.
Over the next nine years and a move to Nashville, things seemed to be pretty normal as I knew it. Can look back now and see things may have been caused from MS.
Spring of 1980 problem with slight numbness in my right lower leg for 3 to 4 days, but numbness came back worse a month later and leg was smaller than left leg. Was sent to Vanderbilt Hospital for a battery of tests after several days and a spinal tap, was told appeared to be Multiple Sclerosis.
I didn't know much about MS. My neighbor while growing up had MS. She would honk and I would go over and help her get in the house when her mom wasn't home. She was a lovely person, good spirit and she never talked about her MS. All I knew was she had MS and had to have assistance walking and mechanical things put on her car to drive.
June 11, 1996 I could hardly drive home after attending birth of my granddaughter. Doc was on vacation so found neurologist to see me. Since I had never had a MRI, he sent me to have one done. MRI showed (benign) Meningioma tumor on brain. He sent me to St Louis and I had surgery to remove it. While there, a MS specialist looked at tests and then checked me out.
In 6 weeks, I was back to work for half days and able to write again.
The Lord gave me my life verse just before the MS diagnosis. Verse is I Thess. 5:18, "In everything give thanks for this is the will of God in Christ Jesus concerning you". Don't know why I have this thorn but do know "He" can get me through the bad times.
Since the diagnosis, I have had several episodes with limbs. Each one lasted about 6 weeks then limb/limbs would return back to use except a little more loss of strength.
My husband cannot feel what I do but has been such a blessing and encouragement. He can look at me now and know it is time for me to rap things up and call it a day. We own a pop and mom business which gets pretty busy and stressful at times.

Just a little editorial note from Frank:

Gwen happens to be my half-sister and we are both afflicted with Multiple Sclerosis! Coincidence?

Tuesday, March 01, 2005

Tysabri, by Frank

In November 2004 the Food and Drug Administration approved use of Tysabri to fight the effects of relapsing/remitting Multiple Sclerosis. Incidentally, I had an appointment with my Neurologist on December 1. It is my opinion that I had not been responding satisfactorily to the Interferon Beta injections that were my primary treatment regiment until that time. I was given a prescription for the infusion of Tysabri every 28 days and began the process of trying to gain insurance approval to begin treatment.

After a month of failed efforts to move the process along I sought the aid of an Oncologist that I had used in a previous infusion therapy. It worked! On February 3 I underwent the first infusion with this drug.

My appointment for the second infusion is scheduled for March 3. It won't happen! The FDA, Elan Corp. And Biogen have pulled the drug off the market, stopped distribution and suspended ongoing clinical trials. Two members of the clinical study have been diagnosed with PML. In one case the patient died and it's my interpretation of the information available that the second individual still suffers from the effects of the disease.

PML is a progressive degeneration of the brain for which there is no known treatment. Just what I want! Another disease that results in progressive degeneration of the brain! Early symptoms seem to mimic many Multiple Sclerosis symptoms (that's my analysis, not a medical professional's) and the diagnostic tools used to identify it are MRI and Lumbar Puncture.

I think it’s too early to react to this! Were there other treatments that provoked this response of the immune system? What is the long term risk associated with this product and what are the long term benefits it offers?

By the way, if you are interested, I have a pretty good explanation of PML I can attach to an email for you. Just add a comment to this Blog requesting it and make sure I’ve got your email address.

The search for a cure continues!