Wednesday, November 16, 2011

My MS Story

It was a long late night, a long time ago.  September 19, 2000 to be exact.  I woke up in the middle of the night, and jumped out of bed, convinced I was having a heart attack.  My left arm was numb, and then suddenly the "numbness" shot up my arm and stopped right above my heart.  See diagram A:

Having a heart attack?
I woke Jeremy up and he drove me to the hospital.

Wait.  I need to back up a little.

I have NO idea when my first symptoms started.  I was married to Tucker when I went blind in one eye.  Or I should say "with" Tucker, as we were married for only 3 of our 9 years together.  That would have been from 1986 to 1995ish.  The doctor said it was because of stress and since I was with an alcoholic, I bought it.  Then there was the summer when my knees quit holding me up, and I needed a cane sometimes.  Getting up and down from chairs was painful.  It wasn't joint pain... more like bone on bone pain and extreme weakness, so I chalked it up to arthritis and didn't go to the doctor.  I remember my boss at Help Inc. being really surprised to see me with a cane, so that would have been 1991 thru 1997.  (Believe you me, it's taken me finding my old tax refunds and resumes in order to find those dates, what a brain hurt!)  So, I'm going to say that I've had symptoms of MS since 1995.  Back then, symptoms would come and go, and for the most part, the symptom would disappear between making the appointment and seeing the doctor, so I would usually cancel.  Hence, no real medical record of a pattern of symptoms that a doctor could look back at and draw a conclusion.

The symptom that finally got me serious about finding out what was wrong with me was the tingling pins and needles burning in my feet.  I was seeing Ben then, who lived in Twin Falls.  I made an appointment with a foot doctor.  But a few days before that appointment....

... it was a long late night long ago.  September 19, 2000 to be exact...Jeremy drove me to the hospital.  They did some tests, and a CT scan.  A neurologist was called in, and I don't remember much after that.  We went home, after making an appointment with her in her office to follow-up.

At that appointment with the nuero, Dr. Iris Brossard, she made me identify items in a brown paper bag without looking at them, using my hands only.  I don't remember how I did.  She ordered an MRI of my brain.  After failing the first MRI, because who knew I had EXTREME claustrophobia issues, and it had to be rescheduled with drugs next time.  I failed the second one too, so it had to be rescheduled with anesthesia for the next time.  It seems MRI's cause me to have flashbacks of childhood sexual abuse - the pressure of that machine over me and so close to my face absolutely freaked me out.

At the second appointment with Dr. Brossard, she looked at the MRI's and said "It's not MS, that's what I was worried about".  She ordered a... test where they stick needles in you and then run electricity thru the needles.  Not a fun time, but better than an MRI by far.

Between Sept 19th and Oct 24, I had 8 different MRI's. The insurance wouldn't pay for the brain and spine to be done at the same time.  With or without contrast.  After the third MRI, they refused to use anesthesia to knock me out for the flashbacks, and it was a battle each time to convince me that I needed more than ONE freaking Valium. Oh, I also had a herniated disc surgery during that time, as Dr. Brossard said the numbness in my feet was caused by a herniated disc in my neck.  It didn't get better, it got worse.  The neurologist and the surgeon kept bouncing me back and forth.  Like maybe HIS MRI would show something, even tho HERS hadn't, or maybe HER different brand of contrast was better than HIS.

I should mention that when she told me "it wasn't MS", a bell went ding ding ding in my head.  I looked up MS on the Internet, and on one of the first pages, I had, at one time or another over the years, 13 or 14 of the 15 symptoms listed.  I KNEW it was Multiple Sclerosis.  I agreed to the surgery anyways, cause of course I preferred to think it was the herniated disc, and surgery would fix it.

On October 30th, my birthday, I was scheduled for a 9th MRI, because they still didn't know what was wrong.  The radiologist, as seeing me walk in the door, exploded, and said this was ridiculous and told me he thought I should have a spinal tap - a lumbar puncture.  I agreed, but said we had to do it right now, because if I went home and thought about it, after what he had told me what it was, I knew I'd chicken out.  It's a VERY long needle inserted into your spine, to draw out spinal fluid.  He obviously had a suspicion that it was MS, because a spinal tap is another diagnostic tool for MS, if plaques aren't discovered on the MRI's.

Well, guess what?  On the day before Thanksgiving, 2002, it was official.  I had MS. 

I was "lucky" actually.  Most MS's go years before getting accurately dx'd.  The medical part for me, took only about 6 weeks.  However, if anyone had asked me for a history, asking specifically if I had had eye issues, heat issues, fatigue and urinary issues... perhaps 8 MRI's could have been prevented.

I've learned that doctors don't know everything, and if they resent you looking things up on the Internet - get a new doctor.

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