CCSVI Follow-Up: Niagara Falls & Ultrasound Jelly

Something I've always known that I was going to have to do was travel for my follow-up care.  I knew that I wouldn't be getting any from my MS neurologist here in Winnipeg and asking my family GP would be utterly useless as well, knowing where they both stand on the topic of CCSVI. So when Dr. Sandy MacDonald was granted IRB approval to conduct observational studies for Canadians who traveled abroad for treatment, I knew I wanted to go to his clinic.

As I told you a few blogpost past, I had an appointment booked at Barrie Vascular Imaging in Barrie (obviously) Ontario at the end of April. Being that I live in Winnipeg, we had to fly into Toronto and drive the hour north up to Barrie for my Friday morning appointment, so quite a long haul for a single appointment.  Sheldon and I actually flew into Toronto on a Tuesday night, where we rented a car and visited Niagara Falls / Niagara-On-The-Lake before heading up to Barrie for the scans on Friday. (Might as well make a little trip out of it, right? Niagara Falls has been on my to-do list for a while now and I thought this was the perfect opportunity.)

Niagara Falls, Ontario, Canada

Maid of the Mist boat ride, Niagara Falls

My appointment came on Friday morning and we had no problems finding the little clinic. Being that it' a vascular imaging center and wasn't actually useful to MS patients before the discovery of CCSVI, there were many people there for lots of different reasons. That being said, I filled out a bit of paperwork and was seen right away. Unfortunately Dr. MacDonald himself wouldn't be seeing me, however I feel like I got the next best thing: Dr. MacDonald's technologist and chief vascular sonographer, Angela Lagace. Angela was absolutely wonderful. She was welcoming and talkative - wanting to know where we traveled from and how I've been feeling since. She told us that they still see around 10-15 CCSVI patients daily! Mostly people like me, just wanting follow-up at different intervals, but also seeing new patients every once in a while too (new meaning people with MS who may be curious to see if they have blocked veins before considering treatment).

Angela was trained by Dr. Zamboni and his team in Italy in early 2009, then went back to Italy later that year to teach. Since then, she's also taught various centers in the US and some in Canada on the protocol for CCSVI techniques. The ultrasound I got that day cost $250 and took about 15 minutes.  The jelly was cold and disgusting and was put all over my neck and face. She scanned both sides of my neck and the side of my face, laying down and then sitting up at 90 degrees. She said she'd be sending the results to my doctor in California, but could also forward me them to me if I wanted. Of course I wanted.  She also warned that the results would consist of a bunch of mumbo-jumbo I may not understand, but that the last couple lines would be the most important. It would either say either NORMAL or ABNORMAL.

Now before I get to the results, I wanna explain how I was actually torn between which results I truly wanted to hear. You might think I'm crazy 'cause who in their right mind wishes for abnormal results, however abnormal explains a few things that normal doesn't. Abnormal could explain my flair up over Christmastime... abnormal could explain my muscles spams back a few months ago... abnormal could explain my random muscle weakness... Abnormal could explain my I'm never 100%. Normal wouldn't explain much.  Normal would mean that my veins are exactly where and how they are suppose to be.

Well my results were normal.

No evidence of DVT (deep venous thrombosis).

No venous insufficiency is noted in the internal jugular veins at 0 or 90 degrees.

Negative values for cross sectional areas of the internal jugular veins.

Normal valvular B-mode.

No Zamboni criterion met, study negative for CCSVI.

I'll admit I don't know exactly what all of the report meant but I got the gist of it - nothing has changed since I was treated. I'm happy with those results for one reason: I don't have the blocked vein odds working against my favor. Did CCSVI cure me? Probably not. Do I regret it? Not for a second!

Standing outside Dr. Sandy MacDonald's clinic, Barrie Vascular Imaging

I'll be traveling back to Barrie for my one year follow-up.

H. xo

MS Walk Number Five: Complete!

If you're friends with me on Facebook, you probably already know that I've been fundraising for the MS Society's MS Walk, as I do every year. Well that walk happened this past weekend, May 6th, and once again I was blown away by the amount of money I was able to raise.

Being that it was my 5th year participating in this event, I needed wanted to take a more relaxed approach. I realized that people needed a break from donating as much as I needed a break from fundraising. When every day you try your hardest to forget you have MS, fundraising is rough because it's a constant reminder. That's why I needed a little break. I also didn't want to pester my family with incessant requests for donations as they were quick to help me out with the cost of my very expensive procedure back in the fall.

Nevertheless my lax attempt did me well. I totaled in at $4355.00, putting me in 2nd place for Top Manitoba Fundraisers. The team I walked with hauled in a grand total of $25,984.00 (with funds still rolling in) which I'm happy to say made us the top Manitoba team. Way to go, MASS SYNERGY!

I say it every year: that I don't plan on participating in next years Walk, but when the time comes to sign up, I'm drawn in every time.  I've been mad at, and skeptical with the MS Society in the past but realistically, they're our number one means of promoting awareness, funding research and providing resources to anyone living with the awful disease. They may not have fully satisfied customers since the CCSVI discovery and their promptness in dealing with the news, however how would we realistically end this disease without them?  For now, I'll continue doing what I've been doing for the last 5 years. We'll see what happens next.

MS Walk 2012 - A big THANKS to all my supporters!

H. xo

The Gilenya Experience

I felt like I hadn't been doing everything in my power to control this disease. Yes, I was eating healthy. Yes, I had gone for the CCSVI procedure. Yes, I was seeing a naturopath and taking dozens of vitamin and supplements daily. I had seen some benefits initially after CCSVI but when I started to see symptoms reappearing after a few months, I started to panic. All I could think of was that my doctors were right all along. I was crazy for refusing all MS drugs. After my rant in the fall about risk vs. benefit with all MS drugs, I felt a little stupid for even reconsidering. These drugs are very harsh on the body and come with multiple side effects. I myself have had anaphylactic reactions, swollen lymph nodes, and constant UTIs while taking certain ones. But once my symptoms started coming around again and the disease was once again becoming loud and unpredictable, I found that I was second guessing my decision to turn my back on western medicine so soon. I felt at the time that natural medicine was something I had to try and if it worked, it worked. Many people have claimed that MS progression can be halted or ever reversed with a strict diet and specific vitamins/herbs and naturopathic medicine has worked for many different kinds of conditions, so of course it's something I had to try. I'll forever continue to eat as well as I can and of course take any vitamins, minerals, herbs or supplements that may work in my favor, but right now I've made the decision to not give up on my neurologist as long as she thinks she still has something to offer me. And her suggestion was the first-ever oral pill, MS drug called Gilenya. 

I am my neurologists first patient on Gilenya, meaning I'm also the first Manitoban on the drug. After I told her that I'd be willing to give it a try, she literally had to put things in place just to get me started. In order to get approved for the drug, I had to go through a handful of appointments. First, and just like any of the other drugs I've taken, there's the seemingly litres of blood that I have to hand over for testing. Liver enzymes and function is a concern and will be monitored throughout the use of this drug. I have to see an optometrist that has been hand-selected by my neurologist who has been familiarized with the drug and the potential that I can developing macula edema while on it. There's a 0.4% chance I will develop this in the first 3 months, however it may also be able to be reversed it caught early enough. There have been reports of hair loss, acne and weight gain (ugh!!). There are also more significant life-threatening problems that could result from getting cold sores while on the drug (don't get 'em) or from catching chicken pox (had 'em when I was younger). I will have to have an EKG to ensure I have no arrhythmia or other heart problems. Now the best part, I will have to take the first dose at the hospital and remain there for 8 hours afterwards because there is a potential that my heart rate will drop so significantly that I'll need medical assistance. I'll be continuously monitored (mind you, by nurses who've never dealt with the situation or the drug before) and if my heart rate starts to drop to below 55 beats per minute, I'll be instructed to run in place to keep it up. Now I don't know if it's just me, but any drug that can inadvertently have that sort of effect on a persons heart is reason to be freaked out!

My bloodwork and other required testing happened very quickly and results came back with no concerns. The only thing left to do was to book my initial dose appointment.

I went for that appointment at 8am on Jan 27th at the Health Science Center and I was absolutely terrified. I guess I'll mention it now that 11 people have died from this initial dose and the 48 hours that follow it. It's a known fact that the drug will slow down a persons heart rate, but after 48 hours it should return to normal pace. I believe the deaths have happened during trials and since, in the 48 hours after initial dose. The heart will just stop. So needless to say why I was all but sh!%ting my pants that morning! Once again, Sheldon held it together for the both of us. (God love 'em - what would I do without him?!) Once I got to the hospital, they set me up in a semi-private room with a bed. The nurse came in and took my initial vitals then passed me a little white & yellow pill and nonchalantly gave me some water. She clearly wasn't briefed that I could DIE today! I don't know what I expected, but I put on a brave face (since I clearly forgot to put on my big girl panties that morning), gave Sheldon a 'look' and tossed it back. Bottoms up!

This is a picture of us in the hospital room right after I took the pill.

The nurse then left the room, saying she'd be back every hour to check on me. Sheldon and I just sat looking at each other, almost waiting for something to happen. It never did. Eight hour came and went, I read Ellen DeGeneres' new book cover to cover and my heart rate didn't go below 56. Then we were sent home. The next day I had some chest pain, that looking back was probably due to the stress of the situation.  I went to the ER that night just as a precaution and my vitals and EKG were all fine so they sent me home. I couldn't help but be worried and didn't want to be too cautious considering the circumstances.  Any time I've had any chest pains since starting this pill, I've gone to the ER, only to be sent home after a perfect looking EKG. It still worries me but I've relaxed a lot compared to the beginning weeks. It's now been over three months that I've been on Gilenya, and I've only really experienced a bit of weight gain (which is annoying but on the minor side in the big picture). I'm now due for my 3 month bloodwork and optometrist appointment this week. I don't want to jinx anything but I've been feeling alright lately. I'm still not able to forget that I have MS as it pokes its ugly head out many-a-days, but I haven't had any huge setbacks since January 27th. I'll take it.  For now I continue to be optimistic about this drug I almost never started to begin with.

H. xo