UCLA Study

Well I head to LA next week to start the trial so I thought I would do a quick blog about it. Back in April, someone on FB posted an article about this study at UCLA. They were looking at estrogen and MS. (This is the article http://www.westsidetoday.com/n9317/new-multiple-sclerosis-study.html ) Basically, women with MS tend to go into a remission during pregnancy, which is strange because they are off all of their MS drugs. It turns out that a form of estrogen called estriol is made by the placenta, possibly causing this remission. This study is giving estriol (or placebo) in pill form and studying the cognitive effects it has on the patient.
Now over the years I had talked with many people about this remission and why aren't there any studies with estrogen, so when I read this article, I got excited. Here it was! Finally! It was a Saturday so I left a message and the call was returned on Monday. She wasn't sure if they would accept me because of the distance. I assured her that wasn't a problem on my end. there is a direct flight out of Kelowna, my brother in-law lives in LA and I really wanted to be involved. She asked about 30 preliminary questions. I passed those fine. She said she would speak to the ones in charge. A few days later she called and asked if I could come down for the assessment which included a mammogram, cognitive testing, a gyno visit and blood work. A couple weeks later, Ricardo and I headed down. The testing went fine. We had to wait for my blood work to come back confirming that I don't have AIDS and syphillus. (whew, I don't) and then I was officially accepted.
On July 25, I go back for my '0 appointment' which is more testing to get my baseline levels before I get my pills. MRI, mammogram, cognitive testing and neurologist appointments.
This is a double blind study which means no one knows if I get the estriol or the placebo. It's 50/50 and all computerized. The computer decides and dispenses the pills and of course they all look the same. At first I didn't like the high amount of placebo but Ricardo made a good point. I have nothing to lose. I don't go off any of my MS drugs so if I get the placebo, it'd be the same as not being in the study. The placebo is necessary in a study to have an accurate comparison and avoid the placebo effect.
Thanks to everyone for the support and kind words. I'll keep you posted as the study goes on.

back to school...

well today was the first day back to school... for everyone but me. i made the decision last week to delay my return. that was a tough one! all summer i was thinking that i was going back to school as per usual, unfortunately my body did not get that message. after much thought and discussions with my husband, mom and friend, i made the decision and my doctor agreed 100%. my mom made a good point, i was only going back to work this week because school was starting, not because i was ready to go back. i have to remind myself that this doesn't mean i am not going back, i'm just not going back right now.
as you may have guessed, i have not had any amazing and great improvements after the second procedure. it's very strange and doesn't make any sense to me. if my stent/vein was blocked by about 90% and was ballooned and opened, then you would think that i would show some sort of improvement. i am seeing a new naturopath and she is recomending chelation (which i started last week) and a prescription of ldn - low dose naltraxone (which i will start tomorrow). the chelation will detoxify my system of heavy metals and the ldn is suppoed to help with muscle spasticity and fatigue. by doing this, not returning to work and starting an exercise program (yes, i am considering going to the gym!) i am hoping to improve and get back to work! a new gym has opened downtown and they have specific classes for mobility challenged people and the instructor has studied/researched ms. i just have to put down the crochet hook and go down there! (my first fair is on october 2nd at the festival of the grape in oliver. i'm starting feel a little stressed knowing how many more toques i need to make!!)
thanks for all the love and support!
xo

i can't believe it has been 10 days since my procedure! where does the time go?
this was definitely a different experience than last time. there was no dramatic changes like last time. i was sick over the weekend after my procedure so that sucked. not sure if it was a bit of the flu or a reaction to the anesthetic or what. that was no fun! by monday i was feeling much better flu wise but wasn't noticing any big changes ms wise. we flew home that day. when ricardo's parents picked us up at the airport, his dad commented that my walking was better. he said i was stepping instead of dragging. ricardo and i thought that was interesting as neither of us had noticed. i was tired, we had been flying for the last 5 hours and it was 10 at night. all factors that would make me not walk very well. since then, i have been paying closer attention and i think i have improved a bit. over the weekend we were camping and a couple friends that i see regularly and know how i was walking, agreed that i was walking much better! i'll take it! it's not as dramatic as last time but i'll take it! also, looking back to the day we flew home, i walked quite a ways in the calgary airport by myself (ricardo had to go ahead) and i was fine. i didn't really think about it at the time, i just had to get to customs. :)
last week i had my follow up phone call with the doctor. this clinic is concered with treating ccsvi, not ms. there are about 10 specific ccsvi symptoms and they happen to also be ms symptoms. when we spoke, those were the improvements he wanted to know about and if any of my other ms symptoms improved, he said that was a bonus. it's interesting because everyone else is 'treating' ms. so ms really is a neurological disease and ccsvi is a vascular disease and they are intertwined... it's all such a mystery!
all in all, i feel good and am hopeful that i see more changes as the summer goes on. :)

the day after

what a different experience than mexico!! when they said my procedure was 9, they meant 10 to!! none of this mexican time! i was in and out in about half an hour. i slept through most of it. the nurse would tap me to hold my breath at certain times but other than that i was in lala land. i was very awake in mexico and had a lot of pressure and discomfort in comparison. afterward i did have the anesthesia hangover though! that sucked. eventually they gave a magic hangover pill. my only complaint is how they dress the wound. in mexico, they used a dense gauze cylinder on the puncture wound and taped it down crazy tight. these guys put a little bit of gauze on it with some tape. every time i move, i am to put good pressure on it. well, when i was getting off the bed to get dressed, i couldn't get myself up and hold pressure. oops! i gushed blood everywhere. needless to say i wasn't leaving. they got the bleeding stopped with pressure, pressure, pressure! it's all good. i guess i didn't quite understand the importance of pressure! i just slept on and off for the rest of the day at the hotel.

today, saturday, i'm doing alright. haven't done anything yet. we are just taking it easy. i'm still a bit wiped. ricardo has been awesome, of course!! he's been at my beck and call. he holds pressure for me while i heave myself out of bed. then he walks behind me still holding pressure so my hands are free to hold the wall, the chair, etc, on the way to the bathroom. i'm sure it looks ridiculous!! the doctor warned me that i wouldn't have the same exhilarated feeling i had after the first procedure. he doesn't know why that is the case, but it seems consistent. and i have to agree with him. i'm tired and not really feeling exhilarated at all. very weird. so far the first improvement i have noticed is having warm feet. they were freezing yesterday till about 5ish and then all of a sudden they were warm! i guess it's a start. :)

i was able to do a bit of shopping on thursday to replace some of my stolen items. westjet is being great about it. i had to file a police report with a very unfriendly officer at the airport and then westjet gave the go ahead to shop! i did the fastest bathing suit shopping trip ever and got a smokin' deal. (who steals used bathing suites anyway??? gross!!!) i'm not sure if sears in canada has land's end in store but if they do, you should check it out! i'm hoping to do some more replacement shopping before coming home. maybe hit the roxy store and the hurley store! ;)

thanks for all the love!!

xo

Round 2 is in the books

There was very little waiting around this morning. We arrived at the clinic at 7:30 and the admission process began right away. After a couple signatures they took Azure-Dee in and prepared her for the procedure. Around 8:45 they sent me out to the waiting lounge and wheeled Azure-Dee away. I'm told that procedure lasted just over a half hour.

The doctor said that the procedure went well. Both the left and right jugulars had minor narrowing but nothing overly significant. The azygos on the other hand was again the culprit. This time the issue was a built up of scar tissue at the location of the stent. He said that it was 90% blocked and that the blood flow was reduced to a trickle. They used a balloon to treat the area and he said it responded well to the treatment. There is no way to know if the problem will return. All we can do is hope, pray, and keep her on blood thinners.

Right now we are just hanging 10 in the hotel room as she rests up. I guess we will see over the next couple days if she will see any improvements. Let's hope she does.

California.

Yesterday we arrived at LAX on schedule but we didn't leave the airport on schedule. Someone decided to help themselves to half of the contents of Azure-Dee's bag. That took some time to sort through but it looks like Westjet is gonna go good for it. Among items taken, her bathing suits. Who steals a used bathing suit? We got to my brothers place downtown around 7:30 and grabbed some food from Danny's Taco truck parked out on the street. Pretty good for a trailer with a "B" rating on the window from the health inspector. 'Even went back for seconds.

We met with Dr. Arata this afternoon to talk about the procedure. He says they have observed 2 basic valve issues common in the jugulars. One being a malfunctioning valve and the other being a valve that works just fine but is to small. The latter being more difficult to treat effectively for long term results. He says that from the scans it appears that Azure-Dee has the valves that are too small. Not the greatest news but good to know. They are going to treat both sides and we'll see what we get. There are a few potential issues with the azygos. It could be a valve issue, a scar tissue problem from the stent, or some sort of kinking issue. He doubt's its a clotting problem. Realistically there is also a chance that there isn't much wrong at all. That would be horrible news but news we have to be ready to accept should that be the case. The only way to know is to get in there and check it out. So that's what's gonna happen. The procedure is scheduled to start Friday morning around 9:00.

Gonna be a big day.

Almost time to go!

over the last while, i have been asked numerous times if i am excited about this second procedure... i am excited, of course, but i think anxious is more like it. maybe nervous, a bit stressed... i mean what if it doesn't work? or what if it does work and doesn't last again? that would be really hard! i am trying not to worry about it too much as i have no control over it. trying to keep positive thoughts!!
i spoke with one of the doctors at the clinic last week. he was looking at my scans from mexico while we were on the phone. he walked me through what he saw and what would likely happen in my procedure. my left jugular would be treated - it wasn't in mexico. my right jugular would be treated again but with a larger balloon. and the stent in my azygos vein looked to be placed in the wrong spot, possibly a little low. he figured they would have to add 2 to 3 cm of stent to my existing stent. all in all, nothing too complicated or abnormal. works for me!!
we leave for la on wednesday morning, visit with ricardo's brother and wife that night. on thursday we head to costa mesa, have a consultation at the clinic that afternoon and then friday is the big day!! we, probably ricardo, will keep the blog updated so that my mom doesn't have a heart attack from all the worrying that she is sure to be doing!!
thanks for all the love and support! i so appreciate it!!
xo