1 Week Post-Procedure

Oct 12-18th.

I'm not going to lie, the first week after the procedure wasn't a walk in the park.  I wasn't one of those patients who felt immediate improvements as soon as they awoke, but I wasn't one of those patients who had major disabling symptoms to start with.  Yeah I have MS and at the worst of times my quality of life can really suck, but I still have my mobility & independence: two things that many people who get this procedure don't have.  Remember, I went into the procedure feeling really well health-wise.. the best I had felt in over a year due to the diet changes I made.  So if I had no major symptoms present before the surgery, how was I going to tell if things had improved after the surgery?  What I've learnt it that the little changes can take time.  But just like anyone would, I wanted to notice a huge change for the better, and I didn't.  I didn't notice any change upon waking or the few days that followed.  I was trying to be as positive as possible without being too optimistic.  I had gone into this journey being very open-minded and I wanted to come out of it in the same mind set.  Of course I would be disappointed if I saw absolutely no improvements, but this was obviously too soon to tell cause my body was still in recovery mode.  I had to have some patience when it came to healing.  All I could do was follow doctors orders in getting as much rest and water as possible.

Back in Winnipeg, my neck and chest were quite sore from what I had just gone through. I could turn my head to the left no problem because my left side wasn't treated, but turning to the right was sore and painful.  My azygos vein in my chest was the worst.  It gave me what I can only describe as the feeling of heartburn, even though I've never had heartburn in my life.  It was so worrisome that I ended up calling the clinic in California to ease my mind.  I left 3 messages on 3 different phone lines and 3 different doctors got back to me within, let's say, 3 hours!  They all told me that this sensation was quite normal as my veins had basically just gone through a beating.  Also, I Googled "possible side effects" of the blood thinners I was put on and they sometimes can give a person heartburn too.  I felt better with all these answers!

The thing that I was worried about the most and would be worried about for the next few months are blood clots.  It's my understand that it's a concern after any surgery.  Since my veins were stretched from the inside-out and the valves were broken, the body recognized them as being injured.  Just like a cut on the outside of your body, red blood cells would accumulate in that area until it considered the body healed, forming a clot.  It's when a clot breaks loose and starts traveling through your veins, or when there's an excess of red blood cells that get stuck in the area treated that it may cause a blood clot.  The blood thinners are just a precaution to thin out my blood as much as possible in case my red blood cells over-clotted the area.

All I can really do is be diligent with taking my meds.  I also read that if I was to get a clot, the first thing any doctor would give me are blood thinners.  Since I'm already taking blood thinners, I just have to have faith that they're working and stop stressing about a clot. There have been 3 instances since the procedure that I felt like a clot was moving inside my body.  When I've felt it, it's always been in my chest and neck.  Once before bed, I got that heartburn feeling again.  It was uncomfortable and hurt to cough and yawn.  I went to sleep and the next morning the pain was on my opposite side.  I could feel that it had moved overnight (which is a good thing) and within 12 hours the discomfort was gone.  I've never been in excruciating pain; it's always just been discomfort.  Any longer than 12 hours and I'd probably go to the E.R just to be safe.  Fingers crossed that that won't happen!

So like I said, the first week post-procedure was tough but rightfully so.  I could feel that I needed time to heal so that's exactly what I was going to do... and "healing" just so happened to come in the form of getting pampered on the couch!

H. xo

Videos of my veins

Here are a few pictures and ultrasound videos taken from the procedure.  Give the videos a few seconds to load.......

This video shows the doctor opening the 20mm balloon inside my right jugular vein.  20mm's is apparently quite a large sized balloon for a little person like me.  Dr. Harris predicted that my right jugular was so large because of the missing jugular on the left.  They opened the balloon in that particular location because it was where the vein had closed up (aka: CCSVI), therefore limiting blood flow:

This ultrasound video depicts my blood flowing freely after the balloon was opened and the vein was corrected (still the right jugular):

This last video is the left side of my neck.  No jugular present but Dr. Harris was confident that the network of tiny veins were sufficiently draining the blood from the brain:  No jugular = no problem!

This picture just freaks me out!  It shows how far the wire traveled after entering through my groin:

H. xo

After The Procedure: In California

After an extremely speedy 4 hours, I was back in my 'own bed' in our hotel room.  The doctors told my parents not to let me fall asleep for long periods of time, to make sure I stayed extremely hydrated and to keep an eye on me to make sure I was alive at all times! I want to thank my Mom for doing such a great job at that.  I was obviously exhausted and every time I started to drift off into sleepy-land there she was, calling my name and sitting me up to drink more water.  If anyone's ever in need of a personal caretaker or in-home nurse contact me for her number.  She's very attentive and persistent! :)

Besides being a little dopey, I had a huge bandage on my groin to show for what I had just endured. As I said before, access to my neck veins were through my femoral vein near my groin to be as minimally invasive as possible. Because the wound was still very fresh, I had to make sure that I didn't move around too much. The blood had clotted properly after surgery but too much movement could cause it to 'spring a leak', as the doctors referred to it!  Anytime I wanted to bend at the hip, I had to push extremely hard on the bandage.  This was a little painful and annoying, especially when walking.  For this reason, I stayed in my hotel room all day and took it easy.  24 hours after the procedure, I was able to shower and remove the bandage.  I contemplated posting this next picture at first, but wanted you all to see how amazingly small the incision was...... The aftermath bruising was more vicious than the wound itself!

 

They told me to take it easy with foods at first... start with something liquid and slowly upgrade to solids when my stomach could handle it. After the procedure and for the rest of the day I had a smoothie and some cheese and crackers.  Nothing too heavy, but I found that I wasn't very hungry anyway...  (It may of had something to do with the liter after liter of water that mom had me drinking.  My belly literally didn't have any room left for food!)

The next day was a beautiful California day, apparently above seasonal temperatures for that time of year. It reached above 100 Fahrenheit. Unlike most people with MS, I've never really had any issues with the heat (thank god, cause I love summertime and traveling down south). For someone living with MS, being exposed to heat would normally cause their already existing symptoms to worsen, they bodies to feel like mush and cause them the inability to think clearly. Fortunately, heat intolerance is a symptom that has had good results in going away after treatment for CCSVI. And being that this treatment is in Sunny California, it's a symptom that people can notice right away if it's disappeared and enjoy a little sightseeing!

So the day after the procedure (the day it was above 100 degrees), I felt good enough to get out for some fresh air.  We drove down to Newport Beach pier which was just a 10 minute from the hotel.  The sun was nice and it felt good to walk around, but looking back it was probably a little too much, too soon.  I tried to eat but couldn't stomach my meal and the bit of walking made me really dizzy.  The outing wasn't a complete bust though... I got my little bit of souvenir shopping done and got to eat lunch on the pier from the popular TV show, The O.C. - the Bait Shop :)

At 2pm that day, I had a follow-up appointment at Synergy.  Dr. Harris couldn't make the appointment because he was in surgery elsewhere, but one of his colleagues was there to answer any and all of our questions.  I had prepared a list of questions regarding after-care, follow-up care, exercise, sleeping positions, blood thinners, things to avoid, things to do and anything else I could think of.  The doctor went through the findings of the procedure and then answered everything to our liking. We were given multiple phone number and contacts in case anything went wrong, or in case we had any concerns when we got back home.  The doctor also gave me a CD with my MRV results, ultrasound images and short 2-second videos of the actual angioplasty taking place. I also left the clinic with a 2 months supply of blood thinners that I paid out of pocket for because I was scared my GP wouldn't prescribe them for me once I got home.

Now I have to use this space to say how absolutely wonderful Synergy was during this experience.  They had all the bases covered, with every aspect of my trip to Orange County.  I couldn't have been more pleased with my decision in picking this clinic and my surgeon.  Two thumbs up to an amazing team of doctors and staff!  If anyone is reading this who's on the fence about the CCSVI procedure and if/where they should get it done, feel free to PM me for more details.  This is a link to an amazingly well-done video Synergy just had made about their clinic.  Check out my (very hunky) doctor, Dr. Todd Harris, seen at exactly 1:00 min in:  http://www.synergyhealthconcepts.com/synergy/

Mom and Dad left California on Thursday (2 days after my procedure) and I stayed one more night until Friday (because I was told not to leave the area until 3 days post-procedure).  They took all my heavy luggage with them so that flying alone on Friday would be as easy as possible for me.

Travel day on Friday was tough but I managed just fine.  It was definitely good to be home.. in my actual own bed!

H. xo

A diagram of how CCSVI is treated

Here's a diagram that was included in my amazingly extensive information package handed out by the staff at Synergy regarding everything pre- and post-procedure you could ever want to know:

Hopefully this gave some of you a clearer view of what angioplasty of the veins (dubbed "venoplasty") actually consists of.

H. xo

Procedure day

Thank you all for having patience with me in writing this highly anticipated post: the details of my surgery!  It's been one week today that I had the procedure in California. I'm now back in Winnipeg and everything is basically back to normal.  I've been laying low, taking it pretty easy, which isn't very different than what I've been up to these last two month... boy life is tough when you don't have to go to work!

So procedure day has arrived.  I have the first appointment of the day which means I have to arrive at the surgical center by 6:00am.  This is quite a task for me as I haven't gotten out of bed before 10am in weeks.  I haven't been allowed to eat or drink anything since about 8pm the evening before which wasn't a huge deal for me since I didn't inherit my fathers weakness for midnight snacking - LOL.  I popped in my iPod to listen to some relaxing tunes during the drive to the surgical center.  Music can easily set the mood for my entire day.  I had to keep from thinking about (and stressing over) what I was about to go through.  I wanted to be in the best possible state of mind.. even at this ungodly hour!

Once we got there, things happened pretty quickly.  I had to say goodbye to my dad first since only one person could come with me past the waiting room.  I can only imagine how he felt having to leave me at that point and wait outside alone.  Parting ways that soon was the first things that made it REAL for me and this got us all a little teary eyed.  My mom got to come in a little further.  We got ushered back to a room where it was time to get into a gown, get an IV put in and heart monitor hooked up while we waited for the doc to arrive.  I made mom snap a pic of me in this state, to help remember how I felt in that moment.  I think finally, FINALLY it was hitting me!  (you wouldn't think so by my smile, but I was throwing up on the inside)

Dr. Harris arrived just before 7am, came to say a quick hello and disappeared again.  It was then that mom was told to say her goodbyes too (we both teared up again).  They immediately started rolling the stretcher down hallways and through doorways towards the operating room.  The nurses were teaching me a few breathing exercises along the way; exercises that the doctor would possibly ask me to do throughout the procedure.  I knew we had reached our destination when the nurse who was steering the foot of the bed reach up and covered her face with the mask hanging from around her neck. Everything in this room looked out of a scene from Grey's Anatomy.  From stainless steel in every direction to the overhead lights brighter than the sun.  This may have scared the crap out of some but for me, for whatever reason, it gave me a feeling of calm and order... wow, this place was clean! I remember thinking.

From this point onward, things are a little blurry for me.  I remember them telling me they were prepping the groin area, which would be the entry point for the wire and catheter (through the femoral vein which is basically between your pelvic bone and your upper thigh). At one point in time I raised my head to look around for Dr. Harris.  I never did find him - LOL - who knows if he even did the procedure!  I was sedated with 5000 units of Heparin but have no idea when it was given to me.  It was suppose to be a 'conscious sedation' but I barely remember a thing about the whole procedure. Nobody asked me to perform the breathing exercise, which I was bummed about cause I totally aced them in practice! :) The only thing I remember was telling the doctor (or whoever it was) that at one point, whatever he was doing was giving me a headache and it hurt.  I apparently said this 3 times.  I'll explain the reason in a sec.

If you remember what I wrote about my MRV scans the day before, it was that my right jugular showed blockages and reduced blood flow and that my left side was hard to assess from the scans.  The doctor hoped he would find out more regarding blood flow on that side of my neck once he was inside me.  Now that he was in my neck (and I'm taking this info directly from a report that was written post-procedure by Dr. Harris himself), he was unable to catheterize the left jugular, meaning that he couldn't enter it, even after many attempts were made.  It appeared that I had NO left JUGULAR!  A venogram (x-ray) was then performed and it demonstrated 'significant collateral flow throughout the left neck within the vertebral system' which in layman's terms means that even though I have no left jugular, the tiny veins making up the remainder of the left side of my neck have taken over the role and are sufficiently draining the blood from my brain.  On to the right jugular, everything went as planned.  He used a 20mm balloon to disrupt the valve and unblock the area of concern.  An image taken afterwards suggested that the disruption was successful and that it showed improved blood flow.  While over on the right side, a couple attempts were made to gain access to the left side by passing through my sinuses (BLAAAH!) however this is when I came to on the table and told the doctor that I was in pain.  Attempts were then stopped.  The azygous (the vein that runs down the spine) was treated not for blockages, but for a mild abnormality of the valve. A 9mm balloon was used to disrupt this valve and then the venogram x-rays afterwards suggested improved flow.

What felt like 5 minutes total for me, turned out to be about a 45 minute procedure and then 1 hour of recovery time.  My parents came in and sat with me for the last half of recovery. They took this AFTER picture to my dismay:

Pretty hot, I know.  At least my hair net had been removed at this point!  So by about 10am, I was free to go back to the hotel and rest in a proper bed.  Easy peasy, but what a day!

H. xo

Hold tight

For those of you who are eagerly awaiting another blog entry and the gory details of the procedure, know that I'm just as eager to write about them but need a couple more days to get my energy and thoughts together.  I'm leaving California for Winnipeg in a few hours, which would normally be great timing to sit and write on the plane but I was told not to lift anything too heavy for the first couple weeks therefore I'm checking everything and not bringing a carry-on.  So instead, before I shut down my computer and pack it away, I'll leave you with some beautiful shots of Cali:

Mom and I on Sunset Beach

Hollywood

Hollywood Observatory

View from the hotel room

Grounds of the hotel (& me 24hrs post-procedure)

Newport Beach

Have a great day and see you when I get home!

H. xo

Meeting Dr. Harris

Today was the first of 3 days worth of appointments here in Costa Mesa.  First thing this morning I had an appointment scheduled at Newport Diagnostic Centre to get an MRV (same as an MRI but for veins).  I've had many of these in my MS life so I'm used to the tight squeeze into the machine and the loud noises.  They always make you fill out a claustrophobia questionnaire beforehand which I've always been fine with but for whatever reason today was different.  Apparently I had gone too long without embarrassing myself and now was the time to do so!  As the technician rolled me backwards into the machine, panic set in.  I don't know if it was because it was all starting to hit me - that I was actually here and this was happening - or if it was because the IV I was given was especially uncomfortable, but I was not having it.  "Let me out, let me out, let me out" were the words I heard coming out of my (still embarrassed) mouth.

After composing myself, putting a sheet over my eyes so I couldn't see the tightness of the apparatus I was jammed into and going to my happy place for the next hour, I was done.  I was given a CD of the scans which I would bring to my doctors consultation at 3pm.

At three this afternoon I went to Synergy's office.  There, I filled out more of the same paperwork while waiting for Dr. Harris.  I met 3 other patients in the waiting room who had all come from Canada as well for the procedure.  Two were in wheelchairs and the other had a noticeable hobble.  As my parents told them that they were here with me and that I was the one getting the procedure, they couldn't believe it cause I "didn't look sick at all".  This made me laugh.  MS can be so obvious at times but more often than not it's a discrete battle.

Dr. Harris finally seen us and answered any questions we had for him.  After spending the past year researching things, I didn't have many questions left.  He looked at the scans of my neck/head and found the following:

• My right jugular: very nice and straight coming down from behind my ear (which is apparently normal and healthy) but then was showing blockages under my ear.  He said it was very typical of everything he's been seeing & treating and should be easily fixed.
• My left jugular: harder to detect what was going on from the pictures. The flow of blood is what makes the pictures clear but this imagine was not clear.  He said the reason for this may be because there is very little or slow blood flow, but possibly just poor picture quality. He said that he'll be able to determine if it needs or can be treated once he gets inside there tomorrow.
• Azygos vein: showed no blockages and looked healthy therefore needs no work

So that's that.  I have the first appointment of the day tomorrow which means I have to be at the surgical centre by 6am.  No drinking or eating after 10pm tonight.  The procedure itself should take 45 mins to an hour, then 2 hours in recovery.  I won't be put completely out... they said I'll be 'awake' but most people don't remember anything.  I hope I'm one of those people!!  If all goes as planned, I should be back in my hotel room resting by 10am.  ***For those of you who are expecting e-mail or text updates from my parents, keep in mind that there's a 2 hour time difference between here and Winnipeg and 4.5 hours between here and Newfoundland.  You may not hear from them til noon Pacific time!

Hope & Faith.

H. xo

CCSVI: the first steps

So here I sit... At CYVR.  Halfway to Orange County, California.  Hopefully my journey to a better life started at 5am this morning when my alarm went off and I set out for the airport.

I'm heading to a clinic in Costa Mesa called Synergy Health Concepts.  About 6 months ago I had heard of this clinic from a man named Dr. Bill Code.  Dr. Code was a canadian Anesthesiologist who lost his privileges to practice when he was diagnosed with MS back in the mid nineties.  When Western medicine had nothing to offer him and the disease he was living with, he switched his focus to alternative medicine choices and an altered diet.  I had just seen Dr. Code speak about CCSVI in Winnipeg during a cross-Canada tour he was doing to promote the procedure.  He, himself has gotten the procedure done at this very clinic in California.  He was advocating for CCSVI, the angioplasty procedure and his thoughts on the whole connections with MS.  Being a doctor himself, he KNEW the best of the best and in his opinion, he has WENT to the best of the best.  It was then and there that I decided I was going where that guy went!

Those who have no idea what I'm talking about when I say "CCSVI".... back in Nov '08, an Italian doctor names Paolo Zamboni shocked the MS world by announcing he believed that MS was caused by blocked, clogged or twists neck veins that was compromising the drainage of blood flow from the central nervous system.  He then devised a procedure involving angioplasty (or stenting) of certain veins in an attempt to improve blood flow.  He found that by doing angioplasty on these veins to open them up and return them to their proper shape, it very often reduced MS symptoms which gave MS patients their quality of life back.  This is when I started my intense research on the topic.  I can very honestly say that not a day has gone by since that revelation back in 2008 that I haven't opened my laptop to read or blog or chat or research the very topic.

Here is a sample of someone's stenosed veins vs. the opened vein after angioplasty.

About a year and a half of researching every aspect under the sun to do with CCSVI, I had made the decision to book an appointment.  I booked this appointment over 6 months ago.  At that time, there were openings within a few weeks but I wanted to give myself time to get my ducks in a row.  I wanted to make sure that I had made the right decision regarding Synergy and the doctors who would be performing my procedure.  I wanted to run it past all my doctors in Winnipeg and try to get at least ONE of them on board (remember, it's still considered an experimental procedure in Canada). I also wanted to make sure it was the best timing in regards to taking time off work.  I'll be temporarily losing my ATC license with Transport Canada once its done because of it not being approved in Canada.  Obviously, I'd like some down-time afterwards to relax and heal as well.  The fact that I've been off work since August due to things out of my control, it all worked out just fine.  If I hadn't already had my flights booked for today, I probably would have went sooner!

I joined a group on Facebook called Newport Beach/Coast Mesa CCSVI.  Here I could talk to many people who knew an awful lot about CCSVI.  I thought I had done my research thoroughly, but these guys gave me a run for my money!  There were links posted daily to medical journals, clinical trial results, newspaper articles, press releases, ongoing and upcoming conferences.  There was never a shortage of something to read.  This group of people were so on top of everything that was happening in the CCSVI world, it was astonishing.  I met people online who had the procedure themselves, and others who were going to be in the area at the same time as me.  What really surprised me was that one of the main interventional radiologists, a doctor who is performing this procedure on a daily basis at Synergy had joined the Facebook group as well.  He'd even respond to posts on occasion.  This is a prime example of how Facebook has changed the world for the good.  I can honestly say I've spent way less time creeping on profiles and MUCH more time being productive just by joining this group - LOL - Oh Facebook, how I love thee!

Anyway, as I sit in the Vancouver airport about to board my next flight, I can't describe to you how I feel.  Honestly.  It's not that I'm soooo excited or soooo nervous that I can't quite put it into words but I honest don't. know. how. I. feel.  It's like my emotions are turned off which is a very odd feeling for me, being the emotional wreck that I normally am - haha.  I suppose there's excitement and nervousness, but so far it hasn't hit me that the day has actually come.  One thing that's making me anxious is that there's a possibility that I won't see any changes or improvements and that this'll be a total waste of money, but I understand that I'll never know until I try.  Right now there are only a few things I know for sure:  I know that I'm very excited to see my parents when I get there and I'm also very sad that Sheldon couldn't come with me.  I have 2 days to enjoy the California sun before the big day on Tuesday and I plan to take full advantage of them.  Today, I'm living in the moment :)

Cali-4-ni-ayyy :)

H. xo

The breakdown since 08/24

*** 

Readers discretion is advise.  As this is a blog about my struggles with MS, it's also very descriptive of some personal issues that I face.  It's something I'm comfortable with sharing, as it's all part of the trials and tribulations of my life , but just be aware that it may not be something you feel comfortable with reading about me. Again, the purpose of this blog is to give some of you insight into the condition, and maybe give other MSers a little comfort in knowing that someone else is going through the same struggles as them.

***

Since August 24th, my life has been turned upside down.  On the 24th, I expected to go into work pretty relaxed and refreshed after just having 3 days off, but I had woken up that morning with double vision.  It had showed up suddenly, as most of my MS symptoms do.  Since my official relapse back in January of this year, my symptoms have definitely been kicking me in the butt.  It's as if I never totally recovered from that relapse.  The episode itself had consisted of vertigo, lower body weakness, headaches, brain fog, extremely achy legs, coordination problems, vision blurriness, and fatigue to name a few.  Normally with relapsing-remitting MS, these symptoms go away over the weeks or months that follow a relapse.  Mine definitely faded to the point where I could function and go back to work, but they were always there in the background, being a nuisance.  I felt that getting through a 14-15 hour day was just getting more and more difficult to do.  When it came time to end my day, my body sure told me so.  It was as if a computer was being unplugged, and that meant that it was bedtime for this girl!  The only saving grace was that as bad a day I had, I could always go to bed at the end of it and reset my body for tomorrow.  I always felt best in the mornings once this reset process had taken place.  So that's how things have been for me over the past 8 months, that is until I woke up the morning of Aug 24th.

As I said before, I woke up and in the next few hours developed a double vision.  It was as if my eyes could see what was straight in front of me but if I moved them to the side or turned my head, my brain couldn't keep up with the images my eyes were seeing.  There was a lag in processing the information to my brain.  One can only imagine how stomach sick this made me!  I could barely walk through my house without bumping into things, needless to say I couldn't drive or work.  I waited a few hours to see if it would go away before calling in sick.  It didn't let up by early afternoon so I wouldn't be making it into work.  I would see what tomorrow brought.  Hopefully my body would again reset itself with a good night sleep.

Unfortunately it didn't let up the next day either.  It took 2 full weeks for my vision to get back to normal, but luckily it did.  Poor Sheldon had to do everything for me, from buying groceries and cooking me meals to driving me around and helping me keep my house in order.  There's no worse feeling than the feeling of needing someone to help you with the most basic tasks.  Being as independent as I am, I didn't like this at all!

I was able to get into the MS clinic and see my neurologist before the end of August.  I already had my 6-month MRI booked for the 29th and the doctor could see me the next day due to my current state.  The weird thing about MS is that symptoms can act up if you have any type of infection going on in your body.  So if you think you're having a relapse, the first thing the MS nurses get you to do is check for a bladder infection or seasonal flu.  Me being someone who gets a lot of bladder infections, it was quite possible I had one.  So as I waited for all these appointments to happen, I went to the walk-in clinic to get ma pee tested!  Positive for bacteria - it looks like I DID have an infection that I didn't know about - great!  The walk-in doctor then prescribed me with a course of antibiotics that I use every time I get one of these infections (like I said, it's a normal occurrence and pretty routine for me now).

So as I'm waiting for these upcoming appointments, something else happens.  I have a severe allergic reaction to the mediation that I inject daily for the control of my MS.  This has been an ongoing battle with me and my doctors.  I've had this type of reaction before, have gone through a process of 'de-sensitization' to the drug, and have been encouraged to get back on it, all to my dismay.  This particular evening, Sheldon was staying over cause I wasn't feeling all the best.  I took my shot before bed as I always do, and within 5 minutes I became very hot, and nauseated.  I was sweating and had chills and very quickly started to break out in hives all over my body.  We jumped in the car and drove the 5 blocks to the ER and they admitted me immediately.  There, I was a given epinephrine through IV and monitored overnight.  At this point, I can't seem to catch a break.  When it comes to this disease and my health.... as they say, when it rains, it pours!

So my MRI appointment comes.  These are also pretty routine for me, as I've been having them every 6 months since being diagnosed (this isn't quite normal, but since I've changed my MS 'disease modifying drugs' a couple times throughout my diagnosis, they just wanted to make sure the drug is doing what it's suppose to by checking my MRIs more often than normal).  I was having a really bad day this day and was super emotional with an intense headache (not to mention nauseous from my crazy vision) so putting me through this whole process of getting into a hospital gown, not being able to find my vein for the dye IV, having to lay through 45mins of the blaring MRI machine while I basically held back tears to stop from moving ("now lay perfectly still, don't even blink or this won't work") was complete torture and a total slap in the face of how sick I actually am.  Here's the bruise I got to remember the experience by:

So now that's all said and done, Sheldon drives me to my neurologist appointment the next day.  I'm there to discuss my current state of affairs and my results from the day before.   After a thorough physical exam and me listing all my new and old symptoms, we look at the MRI scan.  She normally points out any new lesions formed and explains what this could mean for my future.  This time, she glanced through it without offering to show me or explain any changes.  All she said was that my MS has become 'aggressive', that there were many new active lesions on my brain and that my currently medications didn't seem to be helping.  She then lists to me 3 ways to proceed from here.  I think, "OK great, I still have options!"  Boy, was I wrong!

I was less than thrilled by the options she gave me.  I was stunned at what she was actually saying!  Like, do you hear yourself, doc?!  You want me to do what?!  In layman's terms, my options were:

1. Continue on the current course of medications, supplemented by high doses of the steroid Prednisone once a month to try and keep any potential relapses under control. (Prednisone is the drug sometimes used to speed up the recovery after a relapse.. it's also a drug I can't take while working)
2. Tysabri, a once a month infusion that apparently greatly reduces the progression and symptoms of the disease.  The down side is that this drug can sometimes cause PML, a rare brain infection that can't be cured.  There's no way to screen for who's most susceptible for this infection and there's no cure.  If you catch it, you'll die.  The chances of catching this virus is 1/400 and after 2-3 years on the drug, your chances increase to 1/40! 
3. Low-dose chemotherapy.  Apparently MS patients benefit from this and it would be my doctors #1 choice for me if I had already had children.  This method would greatly reduce my chances of ever getting pregnant.  How can I make that decision at my age?  It wasn't part of the plan..

Since I'm not quite ready to give up on my dream of at some point having children, my doctor's recommendation was Tysabri, the brain infection drug.  I walked out of the hospital in a total trance.  I was stuck between a rock and a hard place....

H. xo