What are the odds that you go to the doctor with your 2 year old child, she has an ear infection but the doctor notices something is wrong, very wrong with you? Imagine what the phone call is like when, as a parent, you hear your 21 year old daughter is heading to the hospital in an ambulance... from a DOCTORS OFFICE OF ALL THINGS! Gads! he can't fix her? Oh! the thoughts just race in your mind.
At the hospital they scan, test, draw blood, poke and prod... "Sorry, it's nothing more than migranes. Take these, they'll make you feel better." They want an MRI but the hospital can't get permission from the insurance company... you learn alot about managed health care. (that'll be another blog entry
I'll pick up at our first letter (4/4/08) to friends and family letting them know what was going on:
Some of you may have not known that Rachael has been very ill the last couple of weeks. I wanted to give you an update now that we finally have a diagnosis. A few weeks ago, suspecting MS (Multiple Sclerosis) they did an MRI (magnetic scan) looking for lesions on her brain, a primary indicator of MS. When they found no signs of MS they moved on to other possibilities. With a spinal tap, they concluded that she had Viral Meningitis, unfortunately the symptoms never stopped. In a matter of less than 3 weeks, she has deteriorated rapidly and now can not walk, has slurred speech and lacks most gross motor skills in her hands and arms (plus a multitude of other nasty symptoms).
Three days ago they ordered another MRI. Typically during the onset of MS a person might have a few lesions (scarring from the deterioration of the myelin sheath protecting the nerves in the brain.) During the progression of the disease people with MS that have a relapse might gain 1 or 2 more lesions. In other words, the normal progression of the disease may add a few more lesions every couple of years and people can live with the disease their entire life with little impairment as it progresses. My daughter was officially diagnosed with MS by her neurologist yesterday.
My daughters scan showed something very contrary to the normal progression though. The doctor didn't count every lesion but said that she could easily have 60 to 65 lesions (remember she went from zero to 65 in less than 3 weeks). Her official diagnosis is malignant Multiple Sclerosis. This form of MS progresses very rapidly and causes severe damage. If the progression does not stop it can be fatal.
Today her neurologist is taking a very desperate step to hopefully stop/slow the process and move to remission. She will be getting a chemo-therapy drug, Novatrone, that has been useful in controlling this form of MS.
While things look bleak, my family has remained positive and ask that you continue to pray. Our faith remains strong that things will turn around.
This was the start of our daughters battle for her life. It was also the birth of a hope in all of us that we were going to get our Rachael back, regardless of the prognosis.
Rach has been taking an immune suppressant called interferon. It has some pretty harsh side effects which have slowed Rach's progress. Rach's neurologist decided to reduce her dosage by half yesterday. Today she is much more stable, she seems stronger and more alert. Probably the best word to describe her would be "bright".
