Meeting Dr. Sealy (the BEST Neurologist EVER) and ‘Getting slapped with the UGLY stick of My New Reality’

Original Post 6.27.2017

Soooooo….the appointment with the doctor that would become my lifeline to sanity came quickly.   He sent me downstairs to the imaging office for a full set of MRIs.  He wanted the brain, cervical spine, and T-Spine, both with and without contrast.  That was an interesting procedure. It is one thing having your head and neck in an MRI machine for say 10 minutes for both with and without contrast.  It is a Totally Different matter being in there for approximately an hour. Starting with your brain, moving to your neck, and then moving fully into the machine for your spine……then do it all again once they shoot you up with dye.

UGGH……Please before you get one of these Loooooong MRIs…go pee.  Laying on your back for an extended period of time tends to make you want to pee.  You can’t cross your legs while you are in there either.  😉 Yet, the worst part is that you cannot move.  Really, CANNOT MOVE for about an hour.  No scratching your nose, no sneezing, no clearing your throat, no moving your head….etc. etc.

Your butt or I should say your tailbone (if you are skinny-ish) pushes against the table, in the same position, for what seems like eternity.  After a while it starts to ache. NO FUN.  I’m lucky too since I am not claustrophobic.  I actually find the very loud banging of the machine as it does it’s thing, relaxing.

There is a problem there too.  I tend to fall asleep.  Yeah, that is a no no too. I guess people twitch in their sleep quite a bit.    I’ve gotten the  ..tap tap tap on the microphone “Ahem, Ms. Morrison, you need to stay awake please. No napping.”

So, moving on.  I go back upstairs with my newly developed very large MRI scans.  There were only a few pages, big pages, but it seemed like there should be waaaaay more with as long as the MRI took.  Since it was a rush job, the radiologist just sent up the interesting ones first.

Wow……The doc takes time to look over the pictures then comes into the room.  He says that just by looking at my scans, it is very probable that I have Multiple Sclerosis.  He then says, no, I am diagnosing you with MS. We may do a spinal tap later to confirm it, but you have it.

He picks up the first set of pictures and points me to my Cervical region where there is what looks like a golf ball in the middle of my neck.  Lesions on my spinal cord…… Neat-o.  Then he brings out the star of the show.  There is my brain….my poor little brain… kinda gray with a squiggly surface; but, there are these white spots……Many Many Many white spots, scattered around my brain.  Not just in one spot, but everywhere.   It looked like a painter took his brush full of white paint, pulled the bristles back with one hand, and slowly let them go so little splatters of white paint were flung everywhere. Also, my Ventricles were surrounded by lots of white area.

Then doc then told me that I had the ventricles of a 70 year old.  Wow…. I was only 28 years old.  I was also told that by the look of my brain, I had had MS since I was probably in my early 20’s, or possibly in my teens….and thinking back….I can remember a few time periods where I was experiencing weird stuff that I now know can be MS symptoms.  So I am guessing at about 14 or 15 was when it started.

Anyway, the doctor said that I needed to start treatment right away. See my MS started with my legs being affected, not my eyes.  In fact I have never had issues with my vision.  With the legs being affected first, the concern was that I would have a less favorable prognosis.  He then told me that if I didn’t start treatment right away, that I would be in a wheelchair by the time I was 43.

So Doc….What’s the verdict ??? You have your suspicions, but won’t tell me ? Sooooo, Not Cool !!!

Original Post 6.21.2017

Picking up where we left off….I wen’t to Dr. Rivera’s for the last check on my tibial stress fracture. This was late May 2004. Woo Hoo ! The doc said I was free to run as much as I wanted to, as long as I did it smartly.

As I got up to leave, almost as an afterthought, I said ” Oh yeah, what does it mean when I get a shock down my back when I bend my neck? Do I have a pinched nerve?” The look on Dr. Rivera’s face was priceless, his usual smile disappeared. He was quiet for what felt like minutes… was probably only seconds though. He stumbled for words and finally said, “I’m sending you next door to the imaging facility to get an MRI. I’m going to call because I want it done today.

That didn’t sound promising…… 20 minutes later I was in an MRI tube.

Okay, so I went back to the Dr. the next day. Actually first I went to the imaging facility so I could pick up my Radiologists report, which I then delivered to my Dr. post haste.

YES, of course I opened the envelope and read the report. It is my brain after all, and I did pay for the procedure.  The MRI was done – with and without –
contrast (dye) on my Cervical spine.  The report said that there were “Areas of non-specific demyelination .”  Then some time later in the report there was something about a “disease process”.    LOVELY !!

So the doc reads the report. I ask what it is.  With that same sad look (from the previous appt.) he said he had his “suspicions”, but that he wouldn’t tell me. He would leave that to the Neurologist, with whom he was making me an appointment.

LOVELY, AGAIN.  So his office made me an appointment 6 WEEKS from that date with some local Neuro.   “UHHHHH, NO.  That is not going to work for me. I’m not going to go 6 weeks without knowing what is wrong with me. That was the first thing that crossed my mind.  (I mean hell, that is 5 weeks, 6 days, and 23 hours more GOOGLE searching time than I could stand to put myself through).  I nicely took the referral and promptly went home and pulled out the phonebook.  (Yes we still had phonebooks delivered to our house WAAAAAAAY back then 🙂 )  I was going to find a Neurologist to take me NOW, I wasn’t going to be satisfied with 6, 5, 4, 3, or even 2 weeks away.

So I lucked out and found a Neurologist that was new to the area and was accepting patients.  I was able to get in 2 days later.  YAAAAAY !

DR. DAWLYN SEALY was, and probably still is…..the most AMAZING doctor EVER !!  

I miss him, I wish he were still seeing patients here in FL.  I get too upset thinking about it.  I am on Neuro #2 since I had to stop seeing Dr. Sealy.
I fired the first one (after Dr. Sealy) becasuse:
#1. his front office staff could not get out of their own damn way. (yes fired, I paid them, so I consider it firing)
#2. he said to me “Oh, I’ve never had a patient on that medication before.” – obviously NOT what I needed to hear. Obviously he hadn’t had many MS patients since this medicine is one of the VERY FEW immune modulator drugs that treat it.
#3. he tried to sell me the book he wrote that taught simple communication techniques for stroke victims and the people who care for them.    “HELLO, I’m here to be treated for a condition that could paralyze me BEFORE I get to the average Stroke age demographic.”

Uggh.  So next post… ‘Getting slapped with the UGLY stick of My New Reality’.

So Doc….you say it’s Multiple Sclerosis….YES !!! Thank You Universe !!!

Original Post 6.16.2017

Yes, you saw that right. I said “Thank You Universe !!!” It’s not as odd as it sounds. When faced with some possible outcomes, one of which is Multiple Sclerosis and another is a Brain Tumor….I said bring on the M.S. I mean, I can trick out a wheelchair, but I cannot come back from the dead. (not that all brain tumors are fatal, but they sure as hell are scarier in my mind than M.S. Also, there may have been other conditions that could have caused the problems I was having, but those two were the ones that STUCK OUT at me.

I was diagnosed in May of 2004. At that time, my Neurologist believed that I probably had M.S. for years prior to my diagnosis. At least since my early 20’s. I turned 28 two months before I found out I had Multiple Sclerosis.

Yaaaaaaay, goodie, now I have an explanation for all those odd things that I was experiencing.

Something to note about me, I like denial. A healthy dose of denial helps me stay sane. Some days reality just gets to be too much and I can either take it all in and push back out what I want to deal with right then, or take it all in and become overwhelmed and fall apart. So, denial allows me to dump some of my mental trash into a drawer, pick out the stuff I can deal with at that moment, and close it until I’m ready to do some cleaning.

Let’s start at the beginning shall we. In 2003 I ran 35 miles a week and worked out at the gym 5 days a week. I had a full time job, a husband, two children, 2 cats, and 1 dog. I was a busy, busy girl. I also thought I was healthy.

I was training for a half marathon that was going to be the weekend after Thanksgiving 2004. It was the Space Coast Marathon and Half Marathon in Cocoa Florida. I regularly ran 4 to 6 days a week, with one 13 mile run on the weekend.

All was on track, it was a few weeks before the race…..and I did something stupid. I tried to speed up aaaaaaand added a few more miles on to my weekly runs.

Not a good thing to do. I ended up with a stress fracture in my….left….I think it was my left…tibia. It has been a looong time…memory is a bit foggy on the particulars. I thought it was just bad shin splints….but soon accepted the fact that shin splints don’t bring you to tears before you hit the two mile mark. I was devastated. It sucked. I went and picked up my race packet and shirt and quietly stuffed it in my race shirt collection bag, never to be worn. If you don’t run it….you don’t wear it! My family physician sent me to a local internist, Dr. Antonio Rivera.

He said that I shouldn’t run or walk for exercise for a while, but that I could ride a bicycle. The pain wasn’t bad unless I was running or doing a lot of walking. I was told that it was probably a bad case of shin splints…I was given nsaids and a follow up appointment. At that follow up the pain was still the same so the Dr. scheduled a bone scan.

Next morning I went to the hospital to have the scan. “Sit up on that that table” I was told. Now it was a tall table and I’m only 5 ft. 1in. on a good posture day. A few minutes later the scan was done . As I went to hop off the table a tech rushed out….”hold on, hold on, I’ll help you down”. That didn’t sound promising.

Needless to say, I had a Baaaaaaad stress fracture. I wasn’t even allowed to walk once the tech picked me up off the table. He sat me in a wheel chair. WTF. I sat in that thing until they had my leg totally boxed up from toes to knees in some funky brace. I was told to use crutches too. DAMN IT !!! No walking on it at all, even with the brace for , I think it was something like 14 days, then went back for a recheck.

Yaaaay, I got to lose the crutches, but had to keep the stupid brace…for MONTHS. This began October 2003 and I was still being treated by the Dr. in May 2004. That is a LOOOOOOOONG time to go without some serious running.

Well while I had been off my leg, I noticed that when I bent my head forward I had a neat feeling shock run down my spine . It felt neat, but I knew something was wrong. I figured I had a problem with a disc in my neck or a pinched nerve. So I went about life as normal.

The denial thing I was talking about earlier…It had already come in to play. It was allowing me to deny the little odd things I had been experiencing for over a year. The shock thing was just the newest in a line of odd things that I was experiencing. Those little things began a long time before my tibia injury. Denial can be a good thing, but it can also be a B*tch………….

Multiple Sclerosis…WOW…what more can I say ?

man look at those Dawson Fingers…..yeah they’re mine

Sooooooo, who knew? Really? I never would have guessed. The BIG M.S. Once again , WOW !!!

Looking at the big MRI films the Neurologist is showing you….. That weird feeling, where you get hot, then cold, then hot again…….where your hearing temporarily fuzzes out and all you hear is the…”wah wah wawa wah” of Charlie Brown’s teacher. You know…. ‘It’s the Great Pumpkin Charlie Brown.’ You snap back to the present and….”Can you please repeat that Dr.?”

Words like Demyelination, Scleroses, ventricles, neurological deficits, disability, disease modifying medication, lumbar puncture, and Oligodendrocytes….float through the air…..bobbing up and down in front of your face.

Once again……WOW !!!

So, the new To Do list:

Look up Oligodendrocytes and Myelin

…..”proteins…fatty layer”…?

What does Demyelination mean?

…*t, sh*t, sh*t….

Google the HELL out of Multiple Sclerosis

!!! DAMN IT !!!

Get a stiff drink…..heavy on the Vodka

…..Feel a little sorry for yourself…..

Start new ‘disease modifying medication’

…..Cry a little…..OUCH…..Damn It !!!…

Go to a MAJOR book retailer. Order a Grande Cafe Mocha with extra whipped cream and research M.S. some more……WAAAAAAAAY more than you probably should

SIGH…..and realize you have to come to terms with this diagnosis