MS Story Part One

Since people seem interested and since I have been contemplating it as of late.... I will start to compile some of my experiences with Multiple Sclerosis. If you have questions feel free to 'shout em out' (or you can just comment) I would love to answer them. I am often looked upon to speak to newly diagnosed and suspected MS patients (by friends and family, not in a formal setting). So I have no problem discussing the ins and outs as I see them. Remember this is a *personal* account and should in no way be used to self diagnosis or as a potential course of your MS because EVERY CASE is different.


Friday March 13th, 1998

It was a regular day in March, OK as regular as possible for Friday the 13th. Not being particularly superstitious I wasn't too concerned at to what the day would bring, however, I knew I had a problem when I glanced at my calendar and noticed half the dates were missing. Not in a row like 1, 2, 3... Etc. It was sporadic. Crap. Having friends who had been diagnosed before me, I was pretty sure I knew what it was... two letters that scared me to death (MS).

I went to work and the vision in my left eye continued to disappear. While working the ticket counter at an airline I noticed that my passengers’ feet were missing, where they should be was just the same color as the surrounding carpet. This effect is common with the 'blind spots' of optic neuritis but of course I didn't learn that until later. I need to speed this up a bit or we will have a book. Needless to say I went into an urgent care/instacare type facility to figure out what was going on. They told me I could be having an aneurysm. How excited could a 21 year old be about a possible aneurysm... well I was EXCITED - it meant I couldn't possibly have MS. The outlook 12 years ago was much bleaker than today’s standards in regard to the progression of MS.

Anyhow I went to see the on-call ophthalmologist we will call him Dr. Eyes. He was probably pushing seventy years old and although I am not trying to sound ageist in this instance it was problematic. Multiple Sclerosis was still fairly obscure and I doubt the ophthalmologist had even given it a thought. For three agonizing hours he had my eyes dilated and used a large magnifying glass to stare at my retina. This is extremely uncomfortable during an MS exacerbation but I had no reference. I just knew it was like having hot needles stuck in your eye repeatedly for hours.

Dr. Eyes finally stated that he had "witnessed a once in a lifetime event." The Doctor went on to explain that he had seen a blood clot in my retinal vein and it had cleared and my vision should return shortly. Great, again potential stroke in the making but IT'S NOT MS! Because I was uninsured Dr. Eyes was glad he saw it self clear because he didn't want to admit me to the hospital without insurance. Really? I would hope that the Hippocratic Oath would imply that a potential aneurysm/stroke would be concern enough for a night in the old hospital. I didn't want to stay so I didn't push the issue.

Saturday, March 14, 1998
The next morning brought only more bad news. I went back to Dr. Eyes office to see Dr. Eyes son, Dr. Eyes the Second. He was probably in his forties but put me into a machine that tests your fields of vision. Let’s just say in my left eye (appropriately called Oculus Sinister, it was being sinister to me)
I had giant gaping holes in my vision. He suspected a Neurological problem such as... NO ... wait for it... MS. Great do I have an MRI and find out for sure or do I just ignore it and pretend it is not happening. My boyfriend, Frank (again I am using a pseudonym, Frank Burns came to mind for some reason so I went with it) anyhow Frank talked me into scheduling an MRI on Monday.

Monday, March 16, 1998
Salt Lake Community College was holding finals this week. Working full time and juggling school and a boyfriend were difficult but manageable. After concluding my workday around 2:30 I rushed to my 3:30 MRI. Cutting it kind of close but I figured it would all work out OK. An hour for the MRI and the drive to SLCC and take my 5:00 PASCAL final. Yes, I said PASCAL for those who aren't familiar with the term it is an ancient computer programming language that came well before C, C+, and C++ forget JavaScript. I am rambling again. Sorry, I should have warned you at the beginning I have a tendency to type as I think and therefore I may not always speak linearly. Let me sum it up for you. I get the MRI appointment and am put on an 'open' MRI machine. It's called open because it is a very large disk that you lay completely under with your nose half an inch from touching. It is supposed to be for those that are claustrophobic but it was the only MRI machine with an appointment available so quickly. They kept adding test after test and after TWO hours they let me out. Only to immediately had me a $3000 bill for the MRI. Nice, eh? After realizing that I am now MISSING my final I explained (probably more abruptly that I'd like to admit) that, "I will sell my car to pay it off and not to worry. I have to leave now." With obvious fresh IV marks I headed to school. I won't bore you with the finals lets just say my teacher was more than sympathetic to my plight and since we found out lived literally two streets away from each other he would allow me to finish my final project and turn it in to him later that weekend.

Tuesday March 17, 1998
Nothing much. Work. Home. Talk to Frank about all my worries and concerns. He tells me he is also worried but that it will all work out. We talk late into the night.

Wednesday March 18, 1998
Same as Tuesday. Work. Home. Frank.

Thursday March 19, 1998
Work. It was a sorta typical day if you consider the blind spots as just a nuisance and the waiting for MRI results as slightly nerve-racking. My phone rang immediately after I programmed my announcement to run over the P.A., “Flight number 492 to Somewhere, US was boarding out of some gate." I answered it even as I heard my voice throughout the concourse. It was Dr. Eyes, Jr. I don't remember the exact words but he stated,” I wanted you to know as soon as possible you have lesions on your brain consistent with MS." I crumbled to the floor clutching the phone still trying to comprehend what he had just said. Thank goodness my supervisor realized what was happening and boarded my flight while I sat literally under the podium staring at the phone.



IT'S OFFICIAL

When I applied to work at *Airline* it was because my best friends mom suggested I apply. She was my second mom through all of High School. When I came home with pink hair, she was the one to scold me on it. Even though she was working sporadically for *Airline* she happened to be working that fateful Thursday.

After my flight was departed I crawled from the podium beginning my emotional transformation into despair. In a rage I flew up stairs to *Airline*‘s management offices and began my tirade. "How the hell can this be happening to me?" "What the hell am I supposed to do with the rest of my life?" I am sure that I used stronger expletives than hell, but I think I can omit some of those for the sake of my younger viewers. Tears were flowing uncontrollably and I was quite certain that I had just received a death sentence. This is when the managers brought Mom2 to me. She was consoling and kind. Mom2 got the rest of my shifts covered for the next week and a half. Even though she didn't drive often she drove me home - to her house. We spent the afternoon crying and talking and yes even a few laughs. She was the perfect person to talk to right when I needed it most. Tears are welling up in my eyes as I think about it. I went home to tell my parents, but they already knew. I have an aunt with MS so the reality was too clear in their eyes.

Since Frank worked nights at *airline* I decided to meet him in the break room after his shift. At eleven thirty he got off we spoke for a bit (I blurted out that I had MS and he looked horrified). Not much was said as we took the slow moving sidewalk to the airport entrance and less was said on the employee shuttle. When we finally got to the employee parking I learned to my dismay what the silence was about.

“It’s not you. It’s me.”

Could have fooled me. I remember running through the parking lot sobbing. When he caught up to me I pleaded as if I could change the previous events, “You couldn’t have waited just ONE DAY?” Needless to say, even though we had really only started dating a few months earlier I was devastated. Every concern was coming true. I would never marry. I would not find love. I would be destined to live in my parents’ basement forever. I would never enjoy another day of my hopeful short life.

WHAT I REALIZE NOW ABOUT MY PRE-DIAGNOSIS DISEASE

There are many things I look back on and realize they are all related to Multiple Sclerosis. Starting in junior high I noticed that I saw colors differently in each eye. I attributed it to abnormalities in your body that occur laterally. Many women have different sized breasts. Your right eye has a different perception of the world than your left - so that we see in three dimensions. I just assumed that everyone had a slight difference in color also. When we were given color blindness charts in school I had a harder time with my left eye early in life. Memory also tells me that when my close friend was diagnosed with MS because of optic neuritis, she complained of not seeing colors the same in each eye. I guess I shouldn’t have argued so strenuously in 1995.

Junior High was also the age that I began to have headaches fairly regularly. No, not everyone who has headaches regularly should be worried about MS. Migraines and Headaches are a common symptom for sufferers of Multiple Sclerosis. It is sometimes difficult to separate the ‘normal’ headache or migraine from a MS headache. This is because the triggers are usually the same for both types things like: stress, different foods, sleep deprivation, loud noises, bright lights and other ‘regular’ headache precursors. I have determined that the main difference is how effective over the counter medications are at “taking the edge off”. Dependant on where the lesion is on the brain, pain can be real or perceived. I didn’t actually lose the sight in my eye. I lost the nerve impulse to my brain from my eye. The missing passengers’ feet just appeared to be gone because my brain perceived no electrical impulse coming from my eye. It was merely a void and thus was filled in with the color of the surrounding carpet, much like your natural blind spot acts.

We were discussing headaches. Let’s just say my mother often worried that I would overdose on Tylenol. I have been eating like candy for many years now. Even now I take two every night when I go to bed. Yes you read that correctly. On my medical forms I state that I take 1000 - 2000 mg of Acetaminophen (generic Tylenol) each and every day. Nights when I am having trouble sleeping I sometimes worry about long term liver damage. My doctor assures me that as long as I follow dosing instructions I should be fine. With the other medications that I take or have taken we do liver panels every so often to verify.

THE DEPTHS OF DESPAIR

The first year after diagnosis is by far the hardest. It has been confirmed by other MS patients but it is a resounding theme with the ‘survivor’ group. It is a term I use because I think you choose to either be a ‘victim’ or a ‘survivor’. Now there are times when ‘survivors’ will show a vulnerable moment of ‘victim’ but you rarely see a ‘victim’ showing the clarifying moment of ‘survivor’. Maybe I should expand on this some more….

Victims are given the diagnosis of Multiple Sclerosis and they were it like a badge. On the forehead of each ‘victim’ is exactly as it sounds a giant invisible tattoo that says, “MS VICTIM”. They did not choose to get this disease and they make sure everyone knows how terrible their life is because of it. Often you will hear things like, “I can barely walk, let alone ice skate” and “I can’t feel my (insert body part) so I can’t do, watch, be involved with (ANY) activity. There are plenty of times that your symptoms will be unmanageable and limit your involvement is SOME activities. I cannot become a tightrope walker or professional unicycle rider anymore. My balance is greatly diminished on individual tasks. Heaven forbid I ever get pulled over for drunk driving. I doubt I can stand with one leg raised and count from thirty backwards. For that matter I am almost positive I have the tell-tale eye shakes when I am tired. That being said I am almost positive I was never going to walk tightropes or ride unicycles anyway. As for every other activity out there MS can be overcome with some creative thinking. Heat kills me, so aerobics is not great because my brain turns off. Water aerobics gives you the cardio workout but keeps your core body temperature at a much lower level for a longer period of time.

Problem two with ‘Victim’ thinking, When you tell yourself “I can’t” you never will. If you tell yourself “I can", you have a much greater chance at EVERYTHING. Don’t believe me? Check out your local library. You will find that they are filled with self-help books by various authors, all willing to tell you how to love yourself more. I know my mom used to always quote “I’m OK, You’re OK” by Thomas Harris.

I will have to explain ‘survivor’ thinking later… bed time for now…

*** There is a break here because I had this as a short story and now I am expanding***
***It will take some time at this rate***

My diagnosis was quick comparatively, it only took a week. Many people display light symptoms that are misdiagnosed or just plain overlooked.
Twelve years ago I was told I probably shouldn't have kids and that it was likely that I would be in a wheelchair in 15 years. WHOA NELLY. Combine that with my boyfriend at the time dumping me the night I was diagnosed and I was sure I would never be married either. Guess What? I have a very patient husband, two wonderful boys and I walk fine. I am not saying I haven't had my trials and tribulations but MS will not own me. Show your support and join me in the fight for a cure for this crippling disease!!!