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.
Wednesday, July 17, 2013
Tuesday, September 6, 2011
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
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
Monday, July 4, 2011
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. :)
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. :)
Saturday, June 25, 2011
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
Friday, June 24, 2011
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.
Thursday, June 23, 2011
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.
Gonna be a big day.
Monday, June 20, 2011
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
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
Thursday, May 26, 2011
An Update to the Update
well it's been an 'interesting' couple of weeks, to say the least! on easter weekend, i fell down some stairs and hit my head on the wall, getting a mild concussion. thanks to the fall, i finally listened to my body (and my husband) and considered lessening my work hours or taking a medical leave. i really didn't want to do either but i knew something had to change. i spoke to my doctor and he agreed that a medical leave until the end of the school year was a good idea. the day i told some of the people at my school that the next day was my last, was an emotional one. i was sad and very frustrated that i was unable to do my job. they were all so supportive! at the end of the day, i was walking out to my car and in true ms fashion, i tripped on my own foot. i remember stumbling towards my car thinking that if i can reach it, i could catch myself. well, that didn't happen. i fell and hit my head on the curb! i'm not sure if i was knocked out. i don't remember anything after tripping until i was in the medical of the school. sounds like about 15 minutes or so that i don't recall. aparently i didn't know what day it was, the date, what had just happened, the meeting i had at the end of the day, etc but i could remember my social insurance number! weird how the brain works!! anyway, i went to emerg and had to get a couple stitches in the side of my head and of course, i had a concussion!! 2 in 2 1/2 weeks!! not good! aparently i needed to fall again to really confirm that taking the time off was a good thing!! i'm pretty stubborn that way. that was all at the beginning of may (may 5) and i am feeling much better concussion wise. my ms is still acting up - my legs are very stiff and my balance is off. with my time off, i am taking it easy. resting when i need to. going out when i feel up to it. i am trying to not put any pressure on myself to tidy up or get to the grocery store. on what was supposed to be my last day of work, i was to go on a lunch date with my student. needless to say that didn't happen. we finally went out yesterday. it was so awesome! he was so proud to be taking me out. we got caught up and had a nice visit. we both needed that! :) today i was back at school for a meeting and i stayed most of the morning visiting with everyone. it was so nice. i was really sad that i didn't get to say good bye due to my fall. i am so lucky to have all that love and support from my coworkers!
and now for the good news! june 24 i am having the procedure done again. this time we are going to costa mesa, california. it will be nice to speak the same language - that was really my only complaint about mexico. i have spoken to one of the doctors at the clinic about possible issues. it is quite possibly a stent issue - it could be too small, in the wrong place in the vein or have clotting inside. all things are fixable he said. i am mad/frustrated that i have to have this procedure done again but i am so happy and lucky that my inlaws are incredibly generous and loving and are willing to pay for me to get it done. hopefully this will be it and i won't be needing a tune up each year!!
i will keep you posted on round 2!!
and now for the good news! june 24 i am having the procedure done again. this time we are going to costa mesa, california. it will be nice to speak the same language - that was really my only complaint about mexico. i have spoken to one of the doctors at the clinic about possible issues. it is quite possibly a stent issue - it could be too small, in the wrong place in the vein or have clotting inside. all things are fixable he said. i am mad/frustrated that i have to have this procedure done again but i am so happy and lucky that my inlaws are incredibly generous and loving and are willing to pay for me to get it done. hopefully this will be it and i won't be needing a tune up each year!!
i will keep you posted on round 2!!
Monday, April 25, 2011
Hi All.
It's been awhile since I have written. I have been asked how I am feeling since the procedure and if the postitive effects have lasted... if I am being honest, they haven't. I felt great for a good 6 months or so but over the winter I started to regress. My walking took a turn, taking with it my balance and strength. My energy level was the only thing that really maintained but now it is worsening. I am so sad and angry and frustrated BUT I don't regret doing it! and I still tell people that are considering having the procedure to do it! I guess it's all part of the disease right? It affects us all so differently so why wouldn't this procedure. I'm not sure why my symptoms have returned. I have a stent in my azygos vein which can't renarrow and my jugulars were fine in Mexico. It would be kind of weird for them to suddenly narrow over the last 8 months. My father in-law has a theory that the azygos vein is pinched at the end of the stent, essentially causing a blockage... A couple weeks ago when he was telling me about his theory, he also told me he wanted me to return to Mexicao and have the procedure done again and he would pay!! I was shocked at his generosity as they helped pay for the first procedure. I am truly blessed to have such a caring family!! And so now I need to do some research and decide if going back to Mexico is the right decision or should I go somewhere else, maybe in the States and see what they have to say. The last month or so has been tough but I will push through, as I always do. I will keep you posted about the upcoming procedure, wherever it might be. I don't know what they will say or find, but I am hopeful!!
It's been awhile since I have written. I have been asked how I am feeling since the procedure and if the postitive effects have lasted... if I am being honest, they haven't. I felt great for a good 6 months or so but over the winter I started to regress. My walking took a turn, taking with it my balance and strength. My energy level was the only thing that really maintained but now it is worsening. I am so sad and angry and frustrated BUT I don't regret doing it! and I still tell people that are considering having the procedure to do it! I guess it's all part of the disease right? It affects us all so differently so why wouldn't this procedure. I'm not sure why my symptoms have returned. I have a stent in my azygos vein which can't renarrow and my jugulars were fine in Mexico. It would be kind of weird for them to suddenly narrow over the last 8 months. My father in-law has a theory that the azygos vein is pinched at the end of the stent, essentially causing a blockage... A couple weeks ago when he was telling me about his theory, he also told me he wanted me to return to Mexicao and have the procedure done again and he would pay!! I was shocked at his generosity as they helped pay for the first procedure. I am truly blessed to have such a caring family!! And so now I need to do some research and decide if going back to Mexico is the right decision or should I go somewhere else, maybe in the States and see what they have to say. The last month or so has been tough but I will push through, as I always do. I will keep you posted about the upcoming procedure, wherever it might be. I don't know what they will say or find, but I am hopeful!!
Thursday, September 2, 2010
A great news clip.
Latest : No funding? : Canada AM: Dr. Sandy McDonald, surgeon
Wednesday, September 1, 2010
An Update
hello all!
well it's been a little over a month since i had the procedure! where does the time go?!!? i have been doing good. all of my improvements have stayed, which is awesome! but i haven't noticed any new ones since coming home. i'm trying to be ok with that. of course i want to be back to 'normal' but maybe this is it. i also still have my good days and bad days. my good days are great! and my bad days are the same as before - fatigue, tired heavy legs. it's very frustrating but i have to remember that i still have ms and this is bound to happen. the true test will be this time next week when i return to work. i spent august relaxing and camping. it was great but as with july, it went by too quickly!!
tomorrow i am meeting with a physio therapist who specializes in ms. i'm hoping to get an exercise and stretching routine to maximze my improvements. i've never been one to work out so that in itself is going to be a challenge!
last week i saw my neurologist. i didn't tell him i was having the procedure beforehand. as we were walking from the waiting room to the office, he said "has your walking improved?" i said "maybe" with a smirk. he knew something was up. so we told him we went to mexico to have the procedure. he was cool and skeptical. (never rude or condisending) he looked at the x-ray of the stent, the mri scans and then the disc of the procedure. all the while, not saying much. ricardo and i were explaining things. then ricardo said something about me being able to jump now. he looked up with a smile and said, "well, let's see it" so i jumped. i think i impressed him. ;) he then went on to do his exam. he did point out that i was still showing symptoms to which ricardo replied, "well, she does still have ms." at the end of the exam, he admitted i was showing objective improvements which means, he can measure the improvement. he said my balance and right leg were improved. overall i think the appointment went very well. he wants to see me in 6 months for a follow up. i don't think we convinced him that the procedure was the way to go but i did enlighten him and prove that there is something there.
some of my noticeable improvements:
- still holding ricardo's hand
- i can jump
- wash my hair with my eyes closed without leaning on the wall
- walk up 5 or 6 steps without using the railing (still working on going down)
- climb into ricardo's truck without using my hand to lift my leg up to the step
- get out of bed and start walking (i used to stand up all wobbly, hang onto the wall while my legs did their spasm thing, get my balance and then go)
- more energy - i have been told my voice is even perkier
- balance on one foot
- lift leg up, bent at the hip, to a 90 degree
- improved balance
- my walking is better - i am not throwing my right leg forward with my hip - my back likes this improvement!
i have had many people ask if they can forward on my blog or give my email to someone they know with ms, and i say please do!!! if my experience can help one person then it was all worth it!!!
xo
well it's been a little over a month since i had the procedure! where does the time go?!!? i have been doing good. all of my improvements have stayed, which is awesome! but i haven't noticed any new ones since coming home. i'm trying to be ok with that. of course i want to be back to 'normal' but maybe this is it. i also still have my good days and bad days. my good days are great! and my bad days are the same as before - fatigue, tired heavy legs. it's very frustrating but i have to remember that i still have ms and this is bound to happen. the true test will be this time next week when i return to work. i spent august relaxing and camping. it was great but as with july, it went by too quickly!!
tomorrow i am meeting with a physio therapist who specializes in ms. i'm hoping to get an exercise and stretching routine to maximze my improvements. i've never been one to work out so that in itself is going to be a challenge!
last week i saw my neurologist. i didn't tell him i was having the procedure beforehand. as we were walking from the waiting room to the office, he said "has your walking improved?" i said "maybe" with a smirk. he knew something was up. so we told him we went to mexico to have the procedure. he was cool and skeptical. (never rude or condisending) he looked at the x-ray of the stent, the mri scans and then the disc of the procedure. all the while, not saying much. ricardo and i were explaining things. then ricardo said something about me being able to jump now. he looked up with a smile and said, "well, let's see it" so i jumped. i think i impressed him. ;) he then went on to do his exam. he did point out that i was still showing symptoms to which ricardo replied, "well, she does still have ms." at the end of the exam, he admitted i was showing objective improvements which means, he can measure the improvement. he said my balance and right leg were improved. overall i think the appointment went very well. he wants to see me in 6 months for a follow up. i don't think we convinced him that the procedure was the way to go but i did enlighten him and prove that there is something there.
some of my noticeable improvements:
- still holding ricardo's hand
- i can jump
- wash my hair with my eyes closed without leaning on the wall
- walk up 5 or 6 steps without using the railing (still working on going down)
- climb into ricardo's truck without using my hand to lift my leg up to the step
- get out of bed and start walking (i used to stand up all wobbly, hang onto the wall while my legs did their spasm thing, get my balance and then go)
- more energy - i have been told my voice is even perkier
- balance on one foot
- lift leg up, bent at the hip, to a 90 degree
- improved balance
- my walking is better - i am not throwing my right leg forward with my hip - my back likes this improvement!
i have had many people ask if they can forward on my blog or give my email to someone they know with ms, and i say please do!!! if my experience can help one person then it was all worth it!!!
xo
Wednesday, August 4, 2010
CCSVI treatment setback?
This morning a read an article in the August 4th edition of the Globe and Mail, British Columbia edition. The headline read Studies cast doubt on hotly debated MS treatment. Of course I began to read it. It states, New research from Sweden and Germany provide the first negative medical evidence on Dr. Zamboni’s theory. .. Much of the media attention has been focused on the amazing results of this treatment and how Canadians have no choice but to travel at great personal expense to receive it. I guess it's now the neurologist turn at some media coverage.
The studies were published in the Annals of Neurology. Now there’s a big surprise. The neurologists are against any evidence that would indicate the Multiple Sclerosis may be caused by anything other than a neurological condition. For the most part, the Neurological community is out to disprove Dr. Zamboni’s Hypothesis. They don’t seem to be interested in the truth. The study states that there were no unusual blockages in the veins of MS patients compared with a control group. If this control group is anything like the control group they used in the Buffalo study they may as well not used a control group at all. You see the buffalo study used family members of MS patients as their control. This makes no sense as a genetic link is probable in cases of Multiple Sclerosis.
The study in Germany involved 56 MS patients and 20 healthy patients. The Swedish study used involved 21 MS patients and 20 healthy patients. They call that Science? They accuse Zamboni's original study of being to small and contest it with 2 studies that are smaller?
We just got back from 1 single clinic in Mexico that had treated 55 MS patients where every single one had narrowing! Yes – every single one! We personally met 15 of these patients who all testified they had narrowing and were all seeing improvements in their MS symptoms. There are clinics all over the world improving the lives of MS sufferers. There is no telling if the relief will last or if it is temporary. But it has gone far beyond anything offered by neurologist and drug companies.
In Germany they used ultrasound imaging to determine whether or not there was narrowing of the veins. The Swedish study used involved 21 MS patients and 20 healthy patients and they used MRI. MRI and ultra-sound imaging is known to be inconclusive in the diagnosis of CCSVI. You can’t ultra-sound the azygos vein and the use of this technique on the jugular only helps to give an idea of what is going on. Using these imaging techniques, Azure-Dee showed no signs of narrowing at all. Yet the venogram showed her azygos vein was so twisted and restricted that a balloon angioplasty was unable to get into the narrowed area. The only true way of knowing whether or not there is narrowing is to perform a venogram. It is the gold standard. These 2 studies, performed by neurologists, used techniques that have been proven to have inconclusive results. How can you come to a conclusion based on inconclusiveness? It is either idiocy or deception.
The article can be read here.
Ricardo
The studies were published in the Annals of Neurology. Now there’s a big surprise. The neurologists are against any evidence that would indicate the Multiple Sclerosis may be caused by anything other than a neurological condition. For the most part, the Neurological community is out to disprove Dr. Zamboni’s Hypothesis. They don’t seem to be interested in the truth. The study states that there were no unusual blockages in the veins of MS patients compared with a control group. If this control group is anything like the control group they used in the Buffalo study they may as well not used a control group at all. You see the buffalo study used family members of MS patients as their control. This makes no sense as a genetic link is probable in cases of Multiple Sclerosis.
The study in Germany involved 56 MS patients and 20 healthy patients. The Swedish study used involved 21 MS patients and 20 healthy patients. They call that Science? They accuse Zamboni's original study of being to small and contest it with 2 studies that are smaller?
We just got back from 1 single clinic in Mexico that had treated 55 MS patients where every single one had narrowing! Yes – every single one! We personally met 15 of these patients who all testified they had narrowing and were all seeing improvements in their MS symptoms. There are clinics all over the world improving the lives of MS sufferers. There is no telling if the relief will last or if it is temporary. But it has gone far beyond anything offered by neurologist and drug companies.
In Germany they used ultrasound imaging to determine whether or not there was narrowing of the veins. The Swedish study used involved 21 MS patients and 20 healthy patients and they used MRI. MRI and ultra-sound imaging is known to be inconclusive in the diagnosis of CCSVI. You can’t ultra-sound the azygos vein and the use of this technique on the jugular only helps to give an idea of what is going on. Using these imaging techniques, Azure-Dee showed no signs of narrowing at all. Yet the venogram showed her azygos vein was so twisted and restricted that a balloon angioplasty was unable to get into the narrowed area. The only true way of knowing whether or not there is narrowing is to perform a venogram. It is the gold standard. These 2 studies, performed by neurologists, used techniques that have been proven to have inconclusive results. How can you come to a conclusion based on inconclusiveness? It is either idiocy or deception.
The article can be read here.
Ricardo
Monday, August 2, 2010
Home Sweet Home
well, we are home after an evening layover in van. it actually worked out nicely. we got to have drinks with josh, who picked us up and have breakfast with erin who dropped us off. it was so nice to see them. our one dog welcome home committee was pretty impressive! it was like we were gone for months he was so excited to see us!
i have to say the support over this last week has been incredible! i am truly blessed with the family i was born into, the family i married into and all my friends i have collected along the way. thank you all so much. it was really nice knowing people were thinking of me, praying for me and hoping for the best for me.
now that we are home, i am looking forward to relaxing for the rest of the summer. july was so busy with holidays, calgary and bon jovi, then company and off to mexico! i have nothing planned now until labor day! i am hoping this down time allows my body to adjust to this new-found blood flow and do some healing. i hope that with this healing comes many things - maybe taking the dog for a walk, riding my bike or walking down to cosen's bay. all things i could not do without a huge struggle. maybe one day i'll get my feet back into a pair of heels! woohoo! now that would be exciting! all in all, i am stoked with the improvement i have already seen. this time last week i could not climb into my husband's truck without using my hand to lift my leg up. last night i climbed in, no problem! it's kind of weird because i don't know what i can and can't do now until i try. i got so used to using my hand to lift my leg, i had to consciously not do it to see if i could. i have to relearn my body again. when i can do it, i feel like a kid in a 'look mom! no hands!' kind of way. it's kind of funny. one thing i have truly enjoyed over the last week is holding ricardo's hand again! i has been a very long time since i could take his hand because i wanted to and not his arm because i needed to.
anyway, we are home, i am good and will continue to post updates on my progress.
xo
i have to say the support over this last week has been incredible! i am truly blessed with the family i was born into, the family i married into and all my friends i have collected along the way. thank you all so much. it was really nice knowing people were thinking of me, praying for me and hoping for the best for me.
now that we are home, i am looking forward to relaxing for the rest of the summer. july was so busy with holidays, calgary and bon jovi, then company and off to mexico! i have nothing planned now until labor day! i am hoping this down time allows my body to adjust to this new-found blood flow and do some healing. i hope that with this healing comes many things - maybe taking the dog for a walk, riding my bike or walking down to cosen's bay. all things i could not do without a huge struggle. maybe one day i'll get my feet back into a pair of heels! woohoo! now that would be exciting! all in all, i am stoked with the improvement i have already seen. this time last week i could not climb into my husband's truck without using my hand to lift my leg up. last night i climbed in, no problem! it's kind of weird because i don't know what i can and can't do now until i try. i got so used to using my hand to lift my leg, i had to consciously not do it to see if i could. i have to relearn my body again. when i can do it, i feel like a kid in a 'look mom! no hands!' kind of way. it's kind of funny. one thing i have truly enjoyed over the last week is holding ricardo's hand again! i has been a very long time since i could take his hand because i wanted to and not his arm because i needed to.
anyway, we are home, i am good and will continue to post updates on my progress.
xo
Saturday, July 31, 2010
Heading home
well, i'm almost packed and ricardo is squeezing the last few minutes of sun into his day! he's sitting by the pool, enjoying a cervesa and hoping for just a bit of color on that white skin of his.
i'm tired today, ms tired. i think this humidity is getting to me. before we came someone said something about the humidity here in the summer but i didn't believe them. it's the desert! (and i don't remember it being like this when we got married) anyway, it's gross! and thick! and hard to breathe! anyway, back to the hot and DRY okanagan! :)
so we went on the glass bottom boat tour yesterday... not good!! it was hot! it was humid! there was no breeze! the waves were big and the swells were bigger! i puked! :( so embarrassing but i felt better after!
last night my surgeon, dr. moguel came by the hotel for a visit! how awesome is that! ricardo and i sat in the lobby and chatted with him for about 45 minutes. you don't get that kind of one on one at home!
well i better go shower!
xo
i'm tired today, ms tired. i think this humidity is getting to me. before we came someone said something about the humidity here in the summer but i didn't believe them. it's the desert! (and i don't remember it being like this when we got married) anyway, it's gross! and thick! and hard to breathe! anyway, back to the hot and DRY okanagan! :)
so we went on the glass bottom boat tour yesterday... not good!! it was hot! it was humid! there was no breeze! the waves were big and the swells were bigger! i puked! :( so embarrassing but i felt better after!
last night my surgeon, dr. moguel came by the hotel for a visit! how awesome is that! ricardo and i sat in the lobby and chatted with him for about 45 minutes. you don't get that kind of one on one at home!
well i better go shower!
xo
Friday, July 30, 2010
Ready to come home
yup, i said it. we are ready to come home! it's weird. we came to cabo for a reason and it wasn't to drink and party and be tourists. we have done what we came for and are ready to leave. ricardo was ready to leave on wednesday. don't get us wrong, we love cabo but it's not home and we are done. besides, the humidity is gross! ;) and it's just as hot back home!
it is so amazing here. everyday at breakfast it's like a support group. everyone comes down for breakfast and we catch up on how everyone is doing and improving. it's so nice. we've met some incredible people! if you or someone you know is considering cabo for treatment, definitely stay at the marina fiesta with everyone else.
as for me, i'm a bit tired today. my back is really out so my sleep isn't as restful (another reason i want to go home!) i have not taken my muscle relaxant since we've been here and i think my walking is pretty good - much smoother. ricardo says i'm walking like a lady instead of my usual wide stance, choppy gait. i think the feeling is back in my left hand and my right hand is different, not so tingly. i shaved my legs in the shower today and didn't tip! yay!! my heat sensitivity is noticeably improved .i have to remember to celebrate the small things.
it seems everyone is showing some kind of improvement, no matter how small. it's so amazing! people using a cane instead of a wheelchair, lifting their leg up without using their arm, improved balance and sensation, improved heat tolerance. the list goes on! we have met some people that are quite disabled and still have hope. it's inspiring!
we are off for a glass bottom boat ride with another couple. i hope there's a breeze!!
xo
it is so amazing here. everyday at breakfast it's like a support group. everyone comes down for breakfast and we catch up on how everyone is doing and improving. it's so nice. we've met some incredible people! if you or someone you know is considering cabo for treatment, definitely stay at the marina fiesta with everyone else.
as for me, i'm a bit tired today. my back is really out so my sleep isn't as restful (another reason i want to go home!) i have not taken my muscle relaxant since we've been here and i think my walking is pretty good - much smoother. ricardo says i'm walking like a lady instead of my usual wide stance, choppy gait. i think the feeling is back in my left hand and my right hand is different, not so tingly. i shaved my legs in the shower today and didn't tip! yay!! my heat sensitivity is noticeably improved .i have to remember to celebrate the small things.
it seems everyone is showing some kind of improvement, no matter how small. it's so amazing! people using a cane instead of a wheelchair, lifting their leg up without using their arm, improved balance and sensation, improved heat tolerance. the list goes on! we have met some people that are quite disabled and still have hope. it's inspiring!
we are off for a glass bottom boat ride with another couple. i hope there's a breeze!!
xo
Thursday, July 29, 2010
Wanna see it?
This clip shows the slight narrowing in the jugular and the bunged up azygos. It's important to note that Azure-Dee was on the list for the diagnostic scans at False Creek Medical in Vancouver. The diagnostics are only done on the jugular veins. Just like in the doppler imaging done down here it would've showed little to no narrowing in the jugular. That means we most likely wouldn't have pursued having the procedure done at all. It's a good thing we didn't' get in to False Creek Med!!!
http://www.youtube.com/watch?v=ggktj_mxRgw
Enjoy.
Ricardo
http://www.youtube.com/watch?v=ggktj_mxRgw
Enjoy.
Ricardo
Lazy Day
yesterday was a much needed lazy day after everything we went through on monday and tuesday! we laid by the pool and got some sun. it was so nice!
as for me, i'm feeling good. my back is out so that's really annoying! but as far as ms goes, i feel good. my balance is noticeably better. my legs feel steadier. after a day in the sun i was tired but that was from the sun. it wasn't ms fatigue. there is a difference! right now i am still laying in bed so i'm not sure if i have any new improvements from yesterday. ;)
we tried to upload the procedure but it didn't work. we'll probably try again later. it's pretty cool.
we hear the national re-aired an ms story on ginger macqueen. that story is what convinced me this is real and i needed to seriously consider having it done.
if you or someone you know is considering this procedure, i say do it and do it now!! time's a tickin'!!
we are off to breakfast and to find out how the people who had the procedure done yesterday faired.
if you have any questions let me know in the comment section and i'll answer in the next blog.
adios
as for me, i'm feeling good. my back is out so that's really annoying! but as far as ms goes, i feel good. my balance is noticeably better. my legs feel steadier. after a day in the sun i was tired but that was from the sun. it wasn't ms fatigue. there is a difference! right now i am still laying in bed so i'm not sure if i have any new improvements from yesterday. ;)
we tried to upload the procedure but it didn't work. we'll probably try again later. it's pretty cool.
we hear the national re-aired an ms story on ginger macqueen. that story is what convinced me this is real and i needed to seriously consider having it done.
if you or someone you know is considering this procedure, i say do it and do it now!! time's a tickin'!!
we are off to breakfast and to find out how the people who had the procedure done yesterday faired.
if you have any questions let me know in the comment section and i'll answer in the next blog.
adios
Wednesday, July 28, 2010
Woo Hoo!!
hello! hello!
sorry i have not been blogging for a couple days but i was a little busy! ;) looks like ricardo kept you up to speed!
wow! what an interesting, stressful, emotional, frustrating, painful, tiring couple of days!! i think i have run the gamut of emotion! monday was a long day of hurry up and wait. it was hard to remember we are on 'mexican time' around here. they said my procedure would be at 12. i didn't get in till 4 - that's mexican time for you. we purposely left out the info about the stent in the blog because i wanted to tell my mom personally, not in a blog. she was super freaked out about the stent and really didn't want me to have one. ricardo talked to her last night and she took it rather well! it truly was a necessity as the dr. couldn't even get the balloon in there to try and open it so the stent was needed. i did not sleep well on monday night as i was having pain and trouble breathing deeply. tuesday we went back to the hospital to make sure everything was ok. it was! some rest, food, iv fluids and pain meds made the day better. last night i felt great! really!! i did. it's so backwards. i should have felt like crap after the procedure, stress, and lack of sleep but i felt good, quite alert actually. word travels fast around here. there about 10 other couples here for the procedure. when i walked up to the group last night, it truly seemed that everyone was happy and relieved i was doing so much better. it's kind of weird. i just met these people over the last couple of days and we are like a little family! really cool.
i slept really good last night and am feeling great today. i am seeing improvement!!! it's so crazy! my balance is noticeably better. after chatting in the heat for about 15 minutes i stood with my feet together, arms straight out and closed my eyes and i did not tip over, at all!!!!!!!!!!! i should have landed on my face (if ricardo didn't catch me in time!) my walking is bit more fluid and ricardo and i held hands today instead of me holding his arm for support! that was really nice! :) we are trying to stay realistic and celebrate the small things. any change is good change!
today is going to be a relaxing day by the pool. maybe tomorrow we'll venture out and see some sights. we'll see.
thank you all again for thinking of me and keeping me in your prayers.
xo
sorry i have not been blogging for a couple days but i was a little busy! ;) looks like ricardo kept you up to speed!
wow! what an interesting, stressful, emotional, frustrating, painful, tiring couple of days!! i think i have run the gamut of emotion! monday was a long day of hurry up and wait. it was hard to remember we are on 'mexican time' around here. they said my procedure would be at 12. i didn't get in till 4 - that's mexican time for you. we purposely left out the info about the stent in the blog because i wanted to tell my mom personally, not in a blog. she was super freaked out about the stent and really didn't want me to have one. ricardo talked to her last night and she took it rather well! it truly was a necessity as the dr. couldn't even get the balloon in there to try and open it so the stent was needed. i did not sleep well on monday night as i was having pain and trouble breathing deeply. tuesday we went back to the hospital to make sure everything was ok. it was! some rest, food, iv fluids and pain meds made the day better. last night i felt great! really!! i did. it's so backwards. i should have felt like crap after the procedure, stress, and lack of sleep but i felt good, quite alert actually. word travels fast around here. there about 10 other couples here for the procedure. when i walked up to the group last night, it truly seemed that everyone was happy and relieved i was doing so much better. it's kind of weird. i just met these people over the last couple of days and we are like a little family! really cool.
i slept really good last night and am feeling great today. i am seeing improvement!!! it's so crazy! my balance is noticeably better. after chatting in the heat for about 15 minutes i stood with my feet together, arms straight out and closed my eyes and i did not tip over, at all!!!!!!!!!!! i should have landed on my face (if ricardo didn't catch me in time!) my walking is bit more fluid and ricardo and i held hands today instead of me holding his arm for support! that was really nice! :) we are trying to stay realistic and celebrate the small things. any change is good change!
today is going to be a relaxing day by the pool. maybe tomorrow we'll venture out and see some sights. we'll see.
thank you all again for thinking of me and keeping me in your prayers.
xo
Tuesday, July 27, 2010
Day 1 was crazy!
Okay. So. Let's start with a little back story and then we will jump back to where the last post left off.
Remember how the right azygos vein was dramatically restricted? The part we accidentally on purpose left out was that it was so bad that it was impossible to get the balloon in to do the angioplasty. The only thing they could do to open it up was to use a stent. We were told that there was a slight possiblity that this would be necessary and that it would cost $3,000. Azure-Dee and I talked about it ahead of time and decided that if she needed one to go ahead and get it. Less than 10% of patients here have needed one. So when they failed with the angioplasty they asked her if she would like them to proceed with the stent she gave them the go ahead. Stents are made for arteries not veins so it wasn't exactly an easy decision. But the reason we are here is to open up restricted blood vessels. In the cases of extreme narrowing where angioplasty was performed many times there has been a re-narrowing of the veins. With the stent that won't happen.
Let's now jump forward to the chest pains. The pains in the chest were caused by the procedure and installation of the stent itself. The pain seemed to get worse through the night. In the morning I called the surgeon on his cell phone and he told us to come into the hospital. As soon as we walked in the lobby he met us and showed us in. With some fluids and pain meds the pain was under control and x-ray showed that the stent was still where it belonged.
Okay now lets talk symptoms. The first thing that was noticed was last night with the warm feet. Then this morning the leg thing which I described in the last post, and then came the different sensations with the numbness in the right hand.
In the neurological evaluation this evening it became very clear that she had much better balance and more strength in her right leg. Yesterday when she sat on the edge of the bed put both arms straight out in front of her and closed her eyes she immediately tipped over. The same test while standing with her feet together it had the same result. Tonight however when she sat on the edge of the bed, put both arms straight out and closed her eyes she sat still. I'm pretty sure my eyes popped out of my head. She opened her eyes and looked at me with a shocked look on her face and said "I can do it! I didn't tip!" Then standing she was able to stand with her feet together with out major wabbles for quite a few seconds before opening her eyes to help with her balance. It was truly amazing for me to see.
One thing you need to understand about MS sufferers is that any form of stress on the body makes the symptoms much worse. So here we are with an MS patient who had a horrible sleep, had in invasive procedure about 12 hours before, had been experiencing pain described as and elephant was standing on her chest, and she was better than before. That is impossible. That's not how it works. She should not have been able to do things that she hasn't been able to do for quite some time. Her walking is more balanced and fluid as well! I saw it with my own eyes and I still have a hard time believing it. Is she ready to tap dance or walk briskly? no. But to see signs of improvement however small they may seem to some is remarkable.
MS has been all about the unknown, and it still is. But now it's different. There is new hope. Before the unknown was how bad will she get and how long will it take? Now the unknown is how good can she get, how long will it take, and how long will it last? There is new hope and I like it.
Right now Azure-Dee is sleeping. I am pretty sure you will get to hear directly from her tomorrow.
Thanks again for your support. Your messages and kind words mean a lot to her so please keep them coming.
Ricardo
Remember how the right azygos vein was dramatically restricted? The part we accidentally on purpose left out was that it was so bad that it was impossible to get the balloon in to do the angioplasty. The only thing they could do to open it up was to use a stent. We were told that there was a slight possiblity that this would be necessary and that it would cost $3,000. Azure-Dee and I talked about it ahead of time and decided that if she needed one to go ahead and get it. Less than 10% of patients here have needed one. So when they failed with the angioplasty they asked her if she would like them to proceed with the stent she gave them the go ahead. Stents are made for arteries not veins so it wasn't exactly an easy decision. But the reason we are here is to open up restricted blood vessels. In the cases of extreme narrowing where angioplasty was performed many times there has been a re-narrowing of the veins. With the stent that won't happen.
Let's now jump forward to the chest pains. The pains in the chest were caused by the procedure and installation of the stent itself. The pain seemed to get worse through the night. In the morning I called the surgeon on his cell phone and he told us to come into the hospital. As soon as we walked in the lobby he met us and showed us in. With some fluids and pain meds the pain was under control and x-ray showed that the stent was still where it belonged.
Okay now lets talk symptoms. The first thing that was noticed was last night with the warm feet. Then this morning the leg thing which I described in the last post, and then came the different sensations with the numbness in the right hand.
In the neurological evaluation this evening it became very clear that she had much better balance and more strength in her right leg. Yesterday when she sat on the edge of the bed put both arms straight out in front of her and closed her eyes she immediately tipped over. The same test while standing with her feet together it had the same result. Tonight however when she sat on the edge of the bed, put both arms straight out and closed her eyes she sat still. I'm pretty sure my eyes popped out of my head. She opened her eyes and looked at me with a shocked look on her face and said "I can do it! I didn't tip!" Then standing she was able to stand with her feet together with out major wabbles for quite a few seconds before opening her eyes to help with her balance. It was truly amazing for me to see.
One thing you need to understand about MS sufferers is that any form of stress on the body makes the symptoms much worse. So here we are with an MS patient who had a horrible sleep, had in invasive procedure about 12 hours before, had been experiencing pain described as and elephant was standing on her chest, and she was better than before. That is impossible. That's not how it works. She should not have been able to do things that she hasn't been able to do for quite some time. Her walking is more balanced and fluid as well! I saw it with my own eyes and I still have a hard time believing it. Is she ready to tap dance or walk briskly? no. But to see signs of improvement however small they may seem to some is remarkable.
MS has been all about the unknown, and it still is. But now it's different. There is new hope. Before the unknown was how bad will she get and how long will it take? Now the unknown is how good can she get, how long will it take, and how long will it last? There is new hope and I like it.
Right now Azure-Dee is sleeping. I am pretty sure you will get to hear directly from her tomorrow.
Thanks again for your support. Your messages and kind words mean a lot to her so please keep them coming.
Ricardo
Day 1
We are back in the hospital right now, mostly precautionary. Azure-Dee was experiencing chest pain that grew stronger through the night. I called the Doctor on his cell phone and he met us in the lobby as soon as we walked in the door. They hooked her up to the IV and administered some pain meds to control the pain. She is awaiting an x-ray just to confirm that everything is okay.
She slept long through the night but not very well so she is still quite tired. But how about some good news? The numbness in her right hand hasn't fully left but she thinks she has regained some sensation! Also, picture this. You're laying on your back in bed. You bend your knees bringing your heels toward your butt. Kinda like you're getting ready to do a ab crunch or sit-up. Normally when she would do this her legs would want to tip over so she would sort of prop then up against each other. This morning she said "look at this, my legs aren't wobbling." Hopefully with more rest we can have this chest pain figured out and see more signs of continued improvement.
There was supposed to be a neurological re-assessment today that will likely be put of until tomorrow.
She slept long through the night but not very well so she is still quite tired. But how about some good news? The numbness in her right hand hasn't fully left but she thinks she has regained some sensation! Also, picture this. You're laying on your back in bed. You bend your knees bringing your heels toward your butt. Kinda like you're getting ready to do a ab crunch or sit-up. Normally when she would do this her legs would want to tip over so she would sort of prop then up against each other. This morning she said "look at this, my legs aren't wobbling." Hopefully with more rest we can have this chest pain figured out and see more signs of continued improvement.
There was supposed to be a neurological re-assessment today that will likely be put of until tomorrow.
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