Like a complete ass and with regret for the past few years I thought I was
invincible. Quite a juvenile approach from a women at the ripe age of 46. You
see approximately 7 years ago I was diagnosed with clinical isolation syndrome.
What this means , in a kind way, you don't have multiple sclerosis yet, but your
going to get it any day now. For clinical reasons one must present ms symptoms
in an episode more then once before the diagnosis is made.
My symptoms appeared initially as a tingling yet scolded feeling in my left
fingers and within a few days the feeling began to grow up my arm, with a mild
squeezing feeling around my forearm as if someone was holding me tight and not
letting up. Since a blog should be one based on honesty, I will tell you that
this came upon me just hours after I had performed an over-the - knee spanking
on one of my clients. Back then I was a professional dominatrix (NOT a sex
worker, more so a social worker in leather, lol). As I drove home from my
dungeon, I chided myself for spanking Thomas, the fireman, too harshly. Perhaps
in the future, I should interchange spanking with a light weight paddle or hair
brush i though. Then the thought crossed my mind that perhaps I had singed my
fingers on the cup of tea that I made in the microwave and drank on the way to
my Long Island dungeon.
I must stress that Multiple Sclerosis chose me, and its not a good
diagnosis for a hypochondriac. Because i was so busy at the time promoting a
book, I let this one go by a day until my arm eventually was being choked. Then
all the sudden it dawned on me that this is my left arm and isn't the left side
of any body part a symptom of stroke or perhaps heart malfunction? With this
thought in mind, i drove myself to the emergency room and had just about every
blood test, ekg and scan completed. The only thing they did not do was an MRI,
but they referred me out to a neurologist for further review.
Of course as a new patient one must wait to be seen even though i paid a
premium rate of 670 a month for my own insurance policy. But the Internet kept
me engrossed in all possible diagnoses from rheumatoid arthritis to a slipped
disc in my back. Three weeks later I was finally seen and all these silly tests
were performed such as closing my eyes and holding both arms out straight and
even, which I could not do, to touching my nose as directed. The two most
unforgettable moments that day were when my neurologist asked me to put my chin
down close to my chest and asked if I felt electricity- and yes I did, later I
found out that this is called lhermitte's sign and his stern , yet concerned
voice stating that ONE out of EIGHT HUNDRED people will be diagnosed in their
life time with MS. And with that departing thought he wrote me out a script for
prednisone and an MRI with contrast of my brain, cervical and thoracic spine.
Three weeks later I returned to his office to be told that my MRI revealed
one lesion in my cervical spine and a few old ones in my brain as if I had
episodes previously that i was unaware of. The tears flowed steady, my mascara
was now in a Frankenstein design and I thought to myself- why me, im a strong
lady-nothing weak about me for sure? Hearing the diagnosis was actually a
thousand times worse then the ms symptoms that presented themselves. I cried the
next few days, but made a conscious effort to NOT read up on MS. I couldn't
allow myself to get to close to the information due to fear, I would hold onto
my doctors only words- take the avonex and this disease will mildly progress and
i should not be to concerned with all the new medical break throughs. In hind
sight, easy for him to say, seeing that its routine for him to speak to ms
patients on a daily basis and he's not shooting a four inch needle into his leg
muscle once a week.
Well obviously not making a long story short, although i did try, I stayed
on the avonex for 2 years and my MRIS actually improved. But because the
avonex, an interferon, relentlessly made me sick-so sick, flu sick times one
hundred, I had had enough. Copaxone, would be an alternative therapy that i
would try although it was a daily shot rather then a weekly one. This i could
handle initially until around month seven i experienced a rare side effect where
my diaphragm felt as though it locked shut and i gasped for air while my husband
called 911. By the time they arrived the symptoms had let up but my anxiety did
not, and i would not be returning to copaxone again. Now what?
Well around this time it was the "yearly" time and I was due for my MRI's
. After review the mri had revealed that the original cervical lesion had
shrunk drastically to where it was almost unnoticeable. My doctor gave me a
choice after explaining the clinical criteria for MS. He said I really had the
option to wait out a second episode, chances being 50 percent within the first 5
yrs of first episode and 90 percent within the next ten years. Or once again, i
could protect myself by returning to avonex. And this where the term"turn back
the hands of time" comes into play. I, foolishly, in retrospect gambled on my
myelin sheath invincibility and i lost. After two years of not
being prophylactic, and even ignorantly skipping my MRI on the second year,
decided that it was time to see if the gamble paid off. It didn't obviously as
I think I let the cat out of the hat a few paragraphs ago. The last phone call
from my neurologist stated that I have lesions "all over the place"., in his own
words. One major one in the pons of my brain a few small scattered ones in the
thoracic and a quite large one in my cervical. WOW, and now I can say I'm
scared, and now bi can tell you I took my first avonex shot tonight after
several years, and furthermore I can only hope that no one would negate their
health responsibilities as I did.
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