What's Next

Well, what happens next is that i have to come to terms with this shit!

i honestly don't remember what emotions i went thru (i can barely remember what i did yesterday, c'mon) but i do know that i eventually told myself that

1. it could be much worse; this wasn't the worst thing that could happen to me...
2. it is manageable; it was discovered early enuf - I am NOT going to DIE
3. i can/will get thru this

The hardest part initially, to be really honset, was having to give myself a shot (UGH!!!).  I can remember 1 time not having the injector and absolutely REFUSING to take it - a friend insisted that he do it for me and from what i remember he had waaaay too much fun doing it; which brings me to another point, quite a few friends of mine were toooo happy to hear that i had to take a daily shot and were extremely willing to help me out! 

After my diagnosis in 2005, things were quiet/normal even...if not for the bloody shot, i might have forgotten that i had a severe degenrative disease...I used to say, "I am the human, u are the disease - forget u!"...

but then it was April, 2007!!

The date was 5/19/2005...after confirming that it was MS, my doctor was anxious to get me started on treatment.  The earlier it is diagnosed, the earlier the treatment can start and the better off as a patient you are.  How extatic was I to find out that the only available options were shots - not the alcoholic kind; those I could handle (sorta) - no...i had to endure giving myself an injection everyday!  UGH!!! 

True Story:  As a child, i had no problems taking shots...as I got older and smarter, i hated it!  I remember being in Form 4 (5)? (for any non-Trini reading, that was 16 yrs old) one time and having to take a Yellow Fever shot...I held on to my teacher and cried like a BABY while the nurse was administering the shot! 

So now...here is this woman telling me that i would have to read thru the pamphlets on the various treatments and we would talk further about which one i should go on. *Uh...how about none???*  Unfortunately, at the end of it all, i ended up choosing the daily shot.  Of the 4 options available, it had the fewest side effects, it would be the best option if i ever decided to get pregnant and whilst it is a daily shot, there is no mixing/preparing the medication and it comes with an injector so i actually don't even see the needle till I'm done administering.

Around that time, i realized that i had been displaying/seeing/experiencing symptoms for up to at least 2 years prior.  Back in 2003, my vision just got blurry...i did a slew of tests and noone could find anything wrong.  I remember having a conversation with my personal doctor :-), Dr. Laurence and saying that i couldnt understand y anyone couldn't find anything wrong because I knew that obviously there was SOMETHING WRONG!!!  Eventually, my vision just corrected itself, and it became a thing in the past; one of those things that just happens and u move on. 

How was I supposed to deal with the fact that I had Multiple Sclerosis; no-one in my family has this, i din't know anyone with it, i wasn't sure what the next step was supposed to be...

Multiple Sclerosis

Multiple Sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. In MS, the body's white blood cells attack the protective covering for nerve fibers in the brain tissue called myelin sheath. The myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.
When a myelin sheath is worn down or destroyed, the nerve fiber becomes exposed. The exposed nerve fiber is less able to transmit nerve impulses. As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas.  these are referred to as lesions or plaques and this is what shows up on the MRI to help with a definitive diagnosis.

 

I have Relapsing-remitting MS - in other words...my syptoms come and go (as they please) and then stick around for a period of time and then disappear.

The f*cked up thing about MS is that it's not known what causes it, as a result there is no cure.  It's a degenerative disease and as such the treatment for it just slows down the progression of the disease.  It presents itself differently to patients, altho there is consistency.  Symptoms tend to fall into 1 or more of these buckets:

• Sensory
• Vision
• Cognitive
• Bladder/Bowel
• Sexual Activity
• Movement
• Fatigue

I have to admit, that of some stories that i've read, mine seems to be mild - ish! (so far) I've had some things happen...but that is a story for a later post. 

My Diagnosis

I HAD to schedule the Lumbar Puncture, I s'pose.  I remember singing very loudly in my head to distract myself from the EXTRA LONG needle that was being stuck into my spine.  That year one of my favorite Carnival songs was 3Mile...and that was the song that i sang over and over - I think that Gib was in the room too.  As it turns out, it really wasn't that bad, i guess singing the song (or something else) actually helped.  The week after however was TORTUROUS!  the thing about the spinal tap is that they are taking a small sample of spinal fluid from ur spinal column.  the procedure actually leaves a hole (the bloody needle is so big) in ur column and if u don't lie flat for it to heal, the fluid leaks which causes extreme headaches.  Well i am (was) a hero and at that point, i hadn't told my mgr anything, so i was going to work as if things were normal, when in fact they coulnd't be any further from.  My head and neck used to feel like they were in a vise grip and eventually i could take it no more.  There is a procedure that can be done called a Blood Patch (they take some of ur own blood and inject that back into ur spine which seals the hole) but of course there are risks involved as it is a surgical procedure.  I didn't care, i just wanted the pain to stop...

I couldn't imagine how well that would have worked, but as soon as my blood was injected into my spine, the pain vanished - it was incredible.  That was the first time that I cried since all this started because i actually felt all alone and i couln't imagine y this was happening to me...

2/3 weeks later, the results of the Lumbar Puncture were in.  That combined with all the other test results confirmed that I had Multiple Sclerosis.

HAPPY THANKSGIVING!!!!! 

It's 1 of the 2 American holidays that I have completely embraced...

Results

The muscle relaxants worked...whew!...but i had to go back for the MRI and test results.  I'd never had an MRI, had no clue what to expect - lemme just say that good thing i am not claustrophobic.  The technician put a "hanibal" looking mask around my head, gave me some ear plugs and said, "Just lie flat, try not to move and I'm going to take a few pictures of ur brain.  U will hear some loud noises and the test should last about 1/2 hr." She left the room...I was lying on a flat surface (don't remember if it was a bed or not) and there was another larger flat surface hanging above me.  She then said into a mike from the other room, "ok, we're going to start now." the flat surface above me started coming down and stopped within an inch of my face and i had to stay like that for the duration of the test - needless to say it was one of the longest 1/2 hours of my life.

This picture is a much newer version of the machine i was in/under/between.

I went back to see the neurologist, he came into the examination room and he said, "Mrs. O'brien, u've either had a mini stroke or u have Multiple Sclerosis." Please indulge me for a a minute...many times before the eyebrow twitching, i used to feel a tingling in my left arm and everytime it happened, i would jokingly tell my sister that i was having a stroke and she would laugh and tell me that i was an ass and we would move on with our day...now here is this neurologist (who i've since dropped; he didn't have a good bedside manner and he INSISTED on calling me Mrs. O'Brien - dumb ass) telling me that it's possible that i had had a mini stroke in the past...WHAT?!?!?!

From what I remember, he proceeded to tell me a little about MS and then told me that we would have to do more tests to be absolutely sure because of course I would get the disease for which there is no definitive test.   The tests?

• A Visual Evoked Potential Test (what the hell is that)
• A Lumbar Puncture (all i've heard about this is how painful it is!!!!!)

Wait a minute...I din't sign up for this...didn't Richard Pryor die from MS...I wasn't ready...not now...not at all...WTF?!?!?

The 1st signs...

So it started simply enuf.  I woke up 1 day and my eyebrow started twitching - no biggie, that happens ever so often....well 2 weeks later, it was a pain in my ass....I decided to go see my PCP.  He referred me to a neurologist...oh goody!

Of course, in these times a self diagnosis is also important, so I went to WebMD and entered a "twitching eyebrow" to see what would come up...by the time i went to the neurologist, my sister and i had diagnosed me with Bell's Palsy - WRONG!  (this is why we don't have our medical degrees)

I went to the neurologist, he examined me and said that he wasn't too sure so i would have to have an MRI done. i ws still ok at that point, but i wanted something to stop the twitching - because at this point, it was embarrassing. It had moved!!  The entire lower left side of my face was CONSTANTLY twitching/moving/vibrating...I couldn't take it...he prescribed some muscle relaxants and sent me on my way...I would be back in 2 weeks to get the results of the MRI.

The Beginning

Okay, so i'm trying this out for the first time. I know a few people who "blog" and they've all told me that it can be quite therapeutic. I figured, what the heck, i'd give it a try.



So i decided to start this blog to share the story of my living with MS for the past few years and how it's changed my life.