I was laying in bed last night, thinking of Halloween memories...
I can remember dressing up as a bunny. Prior to going out trick-or-treating, I was hoping along, as all bunnies do, when I smacked into a night table beside my parents bed! Blood came pouring out from below my quivering bottom lip. I still have a scar.
I also remember dressing up as Princess Diana, with Andrea as the Queen, and my neighbour Mark, as Prince Charles. It was just after Prince William was born, so I carried around a doll wrapped in a blanket. William got so heavy in my arms, that I ended up carrying him in the treat bag instead!
During our trick-or-treating years, we lived in a HUGE subdivision. It also seems as if more people were home back in those days, waiting to "shell out", compared to now. We had to do the neighbourhood in two parts - stopping at home at the halfway mark to empty our loot bags because they were too heavy!
When we finished for the night, we would come home and examine our piles of loot on the living room floor. Mom and Dad would always have a peek, and grab a few treats for themselves. This past summer, my mom told me what her favourite chocolate bars are. They certainly weren't a kind that I have ever tried myself. I quickly realized (and maybe she did too) that I have never tried them because they never stayed in my Halloween loot pile for longer than a minute!
I'm pretty sure that Andrea scammed me out of some candy too - I sure hope that my spirit protects 2Penny's loot this year!
Halloween Apples!
Emily
Oh yes, and if Scooby-Doo comes to my door this year, I promise not to call him Snoopy!
flashing my hand
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I've had a rough week - week and a bit. But you know all about that stuff - ill mannered medical professionals, missing medical tests and files, and the usual tears and frustrations.
It may seem to you, the reader, that this is my life. Well it certainly occupies a great part of my days/week/months. I have said from the beginning that I will not let MS be me - that I will be me with MS. However, in this blog I have only touched on the medical aspects of my diagnosis. Obviously, the affect is greater than just terrible trips to the doctor.
Next week, I hope to start (again) a gradual return to work. I have not blogged much about work because I try not to focus on work, or think about work. I realized back in the summer that I needed to return to work in my home life before my work life. Well, that seems to be working itself out, and next week, hopefully my work life will start up again.
Then maybe I will be able to get my mind off the other area in my life, and Jason's, that has been wickedly intertwined with my diagnosis. Jason and I spoke about this last night, and whether or not I should include this aspect of our life in my blog and we decided that to not include it, it would be against my purpose of this blog.
***deep breath in***
Prior to my initial neurological attack, Jason and I had been trying to start a family for three years. We had finally given up, and decided to look for answers through a fertility specialist. Our initial appointment was in August of 2006, about two months after my attack began. A few months later, we were told that it would be difficult for us to conceive a baby without the assistance of fertility drugs and some other drugs to correct my egg dispersal system. It turns out that I don't like to share my eggs - I prefer to keep them in my basket(s).
***I still chuckle at that last bit, so you can too***
Anyway - in January I had to make a choice: start treatment for MS, which had me out of commission at that point for eight months; or start a fertility program. We chose to start the MS therapy. That was a terrible time.
As you know, I am currently off of my MS therapy, awaiting a go-ahead on another drug. It is recommended that any persons trying to conceive should be off of their MS therapy for a minimum of three months. BUT - we are in no place to begin trying to conceive. I'm not working, I have a number of odd, unexplained issues, I haven't worked in 16 months, and there are many things to consider.
There is the knowledge that pregnant and nursing mothers seem to get a reprise of their MS symptoms. There is the possibility of having multiple births. There is the possibility that we could try for months, and still not get pregnant. There is the possibility that I could one day have limited mobility and then I would question my parental abilities to have fun (would you believe that a social worker said this to us?) There is the possibility that we could conceive quickly, and I never experience mobility issues.
So, Jason and I continue to play the cards that we have been dealt. Unfortunately, the Book of Hoyle does not contain the rules for this game!
Emily
It may seem to you, the reader, that this is my life. Well it certainly occupies a great part of my days/week/months. I have said from the beginning that I will not let MS be me - that I will be me with MS. However, in this blog I have only touched on the medical aspects of my diagnosis. Obviously, the affect is greater than just terrible trips to the doctor.
Next week, I hope to start (again) a gradual return to work. I have not blogged much about work because I try not to focus on work, or think about work. I realized back in the summer that I needed to return to work in my home life before my work life. Well, that seems to be working itself out, and next week, hopefully my work life will start up again.
Then maybe I will be able to get my mind off the other area in my life, and Jason's, that has been wickedly intertwined with my diagnosis. Jason and I spoke about this last night, and whether or not I should include this aspect of our life in my blog and we decided that to not include it, it would be against my purpose of this blog.
***deep breath in***
Prior to my initial neurological attack, Jason and I had been trying to start a family for three years. We had finally given up, and decided to look for answers through a fertility specialist. Our initial appointment was in August of 2006, about two months after my attack began. A few months later, we were told that it would be difficult for us to conceive a baby without the assistance of fertility drugs and some other drugs to correct my egg dispersal system. It turns out that I don't like to share my eggs - I prefer to keep them in my basket(s).
***I still chuckle at that last bit, so you can too***
Anyway - in January I had to make a choice: start treatment for MS, which had me out of commission at that point for eight months; or start a fertility program. We chose to start the MS therapy. That was a terrible time.
As you know, I am currently off of my MS therapy, awaiting a go-ahead on another drug. It is recommended that any persons trying to conceive should be off of their MS therapy for a minimum of three months. BUT - we are in no place to begin trying to conceive. I'm not working, I have a number of odd, unexplained issues, I haven't worked in 16 months, and there are many things to consider.
There is the knowledge that pregnant and nursing mothers seem to get a reprise of their MS symptoms. There is the possibility of having multiple births. There is the possibility that we could try for months, and still not get pregnant. There is the possibility that I could one day have limited mobility and then I would question my parental abilities to have fun (would you believe that a social worker said this to us?) There is the possibility that we could conceive quickly, and I never experience mobility issues.
So, Jason and I continue to play the cards that we have been dealt. Unfortunately, the Book of Hoyle does not contain the rules for this game!
Emily
3 rights
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I have always just assumed, that if the time were to come that I would have to take someone out - you know what I mean...scrap...drop the gloves...put up your dukes...float like a butterfly, sting like a bee...that I would lead with my left.
Three quick lefts, and then a power shot with my right.
Wrong.
I learned on Monday, that I am in fact faster with hand-eye coordination on my left side! I took out a peg-hole test faster with my left hand than my right hand, not once, but twice!
So in fact, three quick rights, and then a power shot with my left is best.
Good to know.
Emily
Three quick lefts, and then a power shot with my right.
Wrong.
I learned on Monday, that I am in fact faster with hand-eye coordination on my left side! I took out a peg-hole test faster with my left hand than my right hand, not once, but twice!
So in fact, three quick rights, and then a power shot with my left is best.
Good to know.
Emily
Emily's Rick Mercer style RANT!!!
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How does the expression go...when cooler heads prevail?
Yes, well...I'm still justified in my books.
I had a breakdown yesterday evening - I let it all out with tears and screams. It appears to have worked well. I remember screaming when I was indirectly told that I had MS - that was nothing compared to yesterday.
It came to me because I realized that the "treatment" I am receiving is cold, impersonal, robotic, and scripted. When the nurse took my list from me, instead of saying things like, "rise above this", and "you just have to accept it", she could have said, "Would you like to tell me a little more about the circumstances in which you are in when you have trouble remembering someone's name? Do you find that you have more difficulty with your memory when you are tired? A number of patients have issues such as these, and they find it improves if they have a good night's sleep."
Now while that may seem just as scripted, it is more personal, empathetic, and informative. I don't need a life coach, or a rant. I need someone in the medical profession to ease my fears and address my concerns.
And then there is the doctor - the man of no conversation, just instructions: follow my finger, push my arms, touch your nose. I understand that he has a job to do, and by giving me those instructions, he is checking things. So why not end with, "Looks good", or "a little weaker on the right, but still within normal range". How about speaking to me about the drug that I took for seven and a half months and stopped.
Now wait a minute, maybe I should be more fair, and not sum up the whole visit with him into a list of instructions. He did ask me how long I have had the head/balance issues. And he is sending me to a different specialist to make sure that it isn't anything else...because as he says, it isn't my MS.
Yes, that's right. I saw this doctor in April for this head issue. He ordered an MRI, and never saw me again until yesterday. I have been uncomfortable for a long time. And, damn it, I had these same problems over a year ago!
My CNS was attacked...by lesions...lots of 'em...a whole herd of wild lesions wreaked havoc on me...eating away at the fatty substance called myelin that protects the nerves in my CNS...a herd of lesions that were concluded to be the workings of the unpredictable and sneaky disease called MS.
I feel like a donkey that has been corralled in with the horses - when in fact I am a horse - with a horn coming out of my head. I'm still a horse, just a bit different.
Emily
Yes, well...I'm still justified in my books.
I had a breakdown yesterday evening - I let it all out with tears and screams. It appears to have worked well. I remember screaming when I was indirectly told that I had MS - that was nothing compared to yesterday.
It came to me because I realized that the "treatment" I am receiving is cold, impersonal, robotic, and scripted. When the nurse took my list from me, instead of saying things like, "rise above this", and "you just have to accept it", she could have said, "Would you like to tell me a little more about the circumstances in which you are in when you have trouble remembering someone's name? Do you find that you have more difficulty with your memory when you are tired? A number of patients have issues such as these, and they find it improves if they have a good night's sleep."
Now while that may seem just as scripted, it is more personal, empathetic, and informative. I don't need a life coach, or a rant. I need someone in the medical profession to ease my fears and address my concerns.
And then there is the doctor - the man of no conversation, just instructions: follow my finger, push my arms, touch your nose. I understand that he has a job to do, and by giving me those instructions, he is checking things. So why not end with, "Looks good", or "a little weaker on the right, but still within normal range". How about speaking to me about the drug that I took for seven and a half months and stopped.
Now wait a minute, maybe I should be more fair, and not sum up the whole visit with him into a list of instructions. He did ask me how long I have had the head/balance issues. And he is sending me to a different specialist to make sure that it isn't anything else...because as he says, it isn't my MS.
Yes, that's right. I saw this doctor in April for this head issue. He ordered an MRI, and never saw me again until yesterday. I have been uncomfortable for a long time. And, damn it, I had these same problems over a year ago!
My CNS was attacked...by lesions...lots of 'em...a whole herd of wild lesions wreaked havoc on me...eating away at the fatty substance called myelin that protects the nerves in my CNS...a herd of lesions that were concluded to be the workings of the unpredictable and sneaky disease called MS.
I feel like a donkey that has been corralled in with the horses - when in fact I am a horse - with a horn coming out of my head. I'm still a horse, just a bit different.
Emily
Today - as of right now
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I really don't know what to say about my appointment today. I left feeling extremely angry. The kind of anger and frustration that rises inside and you just want to scream and pound on something to get it all out.
As I expected, I did very well with all of the neurological and co-ordination/strength tests. I could tap my toes, touch my nose with my fingers, and push the doctor away. I don't have to endure any MRI's in the next while. The doctor was willing to speak with me about Tsyrabi as a therapy option if I had insurance that would cover it - but I don't. So it looks as if I will be starting a beta-interferon in the next month or so.
The reason why I left angry is that there are still unanswered questions - and as such, there are no new ways to assist me in getting through my periods of, "can't I just replace this head on my shoulders?". I feel mis-understood. I was told once again, to rise above these stumbling blocks as it's too early in the disease to be taken down by it. I was expecting to be asked if I was having any challenges, any difficulties, and new issues, and concerns. As suggested, I made a list of things to talk about, and answers to questions that I anticipated so that I would not forget anything. Well the nurse saw that I had a list, and took it from me. She started to read it, and that's when she began her "rising" speech. I wasn't given the opportunity to speak about my points. No one asked me how many relapses I have had in the past 8 1/2 months.
The doctor does acknowledge that I have a problem - but he does not believe that it is related to my MS. The symptoms that I describe, as well as his hands-on testing of making me sit up and lay down on the cot in the exam room tell him that something is off - and it sounds like it is vestibular in nature. no kidding. He is sending me to an ENT (ear, nose and throat doctor) to eliminate any inner ear problems.
Myself, I am quite happy with the explanations that I have received regarding my motion issues. Just don't tell me that it has nothing to do with my MS. My problems are a result of lesions - lesions caused by MS. Just because I don't fit the script...
I just seem to be continuing on in this void - an unknown world - the Winnipeg Triangle. I understand that I likely have life-long impediment's...I just want to know why, and what is the best treatment. I want one disease.
Emily
As I expected, I did very well with all of the neurological and co-ordination/strength tests. I could tap my toes, touch my nose with my fingers, and push the doctor away. I don't have to endure any MRI's in the next while. The doctor was willing to speak with me about Tsyrabi as a therapy option if I had insurance that would cover it - but I don't. So it looks as if I will be starting a beta-interferon in the next month or so.
The reason why I left angry is that there are still unanswered questions - and as such, there are no new ways to assist me in getting through my periods of, "can't I just replace this head on my shoulders?". I feel mis-understood. I was told once again, to rise above these stumbling blocks as it's too early in the disease to be taken down by it. I was expecting to be asked if I was having any challenges, any difficulties, and new issues, and concerns. As suggested, I made a list of things to talk about, and answers to questions that I anticipated so that I would not forget anything. Well the nurse saw that I had a list, and took it from me. She started to read it, and that's when she began her "rising" speech. I wasn't given the opportunity to speak about my points. No one asked me how many relapses I have had in the past 8 1/2 months.
The doctor does acknowledge that I have a problem - but he does not believe that it is related to my MS. The symptoms that I describe, as well as his hands-on testing of making me sit up and lay down on the cot in the exam room tell him that something is off - and it sounds like it is vestibular in nature. no kidding. He is sending me to an ENT (ear, nose and throat doctor) to eliminate any inner ear problems.
Myself, I am quite happy with the explanations that I have received regarding my motion issues. Just don't tell me that it has nothing to do with my MS. My problems are a result of lesions - lesions caused by MS. Just because I don't fit the script...
I just seem to be continuing on in this void - an unknown world - the Winnipeg Triangle. I understand that I likely have life-long impediment's...I just want to know why, and what is the best treatment. I want one disease.
Emily
no need for DNA testing
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Ok - let's discuss something other than MS. I will be doing enough of that later today when I write down all of my questions and concerns for my appointment tomorrow.
I am happy to hear that my spirit is currently embodied by my youngest niece - 2penny (Rebeccah). What a blessing for her family! Independence, creativity, cute-as-a-button looks, sincerity...and we are both Leo's being tormented by Virgo's! Now unfortunately for her, this means that she is also misunderstood, taunted, and punished for behaviours that she: a) had no part in ; or b) she was loured into by her older sister.
Now when Rebeccah is no longer a 2penny, when she is closer to 3tens, the truth will be revealed to all. Crimes of old, when the punishment has been served, and the statutes of limitations have been lifted, will have new evidence, and individuals who bared witness will come forward. In some cases, the original perpetrator will speak out in an attempt to cleanse her soul.
The result will be the vindication of 2penny!
Now how 2penny's own spirit merges with mine over time will be interesting to witness. Let's face it, she has the DNA of not 1, but 2 parents who are both older siblings...and most importantly, she has the DNA of her mother...independence, creative, cute-as-a-button-looks, sincerity...
A proud Auntie Em!
I am happy to hear that my spirit is currently embodied by my youngest niece - 2penny (Rebeccah). What a blessing for her family! Independence, creativity, cute-as-a-button looks, sincerity...and we are both Leo's being tormented by Virgo's! Now unfortunately for her, this means that she is also misunderstood, taunted, and punished for behaviours that she: a) had no part in ; or b) she was loured into by her older sister.
Now when Rebeccah is no longer a 2penny, when she is closer to 3tens, the truth will be revealed to all. Crimes of old, when the punishment has been served, and the statutes of limitations have been lifted, will have new evidence, and individuals who bared witness will come forward. In some cases, the original perpetrator will speak out in an attempt to cleanse her soul.
The result will be the vindication of 2penny!
Now how 2penny's own spirit merges with mine over time will be interesting to witness. Let's face it, she has the DNA of not 1, but 2 parents who are both older siblings...and most importantly, she has the DNA of her mother...independence, creative, cute-as-a-button-looks, sincerity...
A proud Auntie Em!
how I'm feeling
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I have some time on my hands (my fav tv show doesn't come on for another 15 minutes, and Jason is watching the Bomber game) so I thought that I would come back today with one more post.
I have been feeling a bit strange lately. Emotionally...or maybe just mentally. I don't really know the word for it. I am frustrated by my limitations, and I don't feel productive in my life. I am getting very antsy for something to happen.
I have started the ball rolling to return to work - AGAIN. Last week I met with my rehab consultant, and he then met with my employer. Our plan is to return me to my job as I left it, with a few minor changes. As well, I would slowly build up my clients. I am nervous and scared about this. The initiation to return to work is once again my own.
I wouldn't say that I am bored at home, because there are alot of things that I would love to be doing, but I either don't have the energy to, or can't do certain tasks for long periods of time without getting dizzy. I have hobbies that I love to do, like creating beaded jewlery, and I can't always do that because the mere act of concentrating can send me for a ride on the tea cups!
A balance seems to be missing...I'm just a body, floating around my house. Maybe that means that my spirit is missing...
It's time for me to help find the person who disappeared without a trace...hey, maybe they could find my spirit!
Emily
I have been feeling a bit strange lately. Emotionally...or maybe just mentally. I don't really know the word for it. I am frustrated by my limitations, and I don't feel productive in my life. I am getting very antsy for something to happen.
I have started the ball rolling to return to work - AGAIN. Last week I met with my rehab consultant, and he then met with my employer. Our plan is to return me to my job as I left it, with a few minor changes. As well, I would slowly build up my clients. I am nervous and scared about this. The initiation to return to work is once again my own.
I wouldn't say that I am bored at home, because there are alot of things that I would love to be doing, but I either don't have the energy to, or can't do certain tasks for long periods of time without getting dizzy. I have hobbies that I love to do, like creating beaded jewlery, and I can't always do that because the mere act of concentrating can send me for a ride on the tea cups!
A balance seems to be missing...I'm just a body, floating around my house. Maybe that means that my spirit is missing...
It's time for me to help find the person who disappeared without a trace...hey, maybe they could find my spirit!
Emily
big day coming up
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This coming Monday, October 22, is my six month (but really 8 months) follow up with my MS doctor. I'm nervous.
I'm sure that sounds strange to you. I fully expect to pass all of the neurological tests that involve my reflexes and motor skills, and mostly pass the tests involving balance. I think that the original purpose of the appointment was to check in on how the medication was working.
What is making me nervous is my ability to convey my "hidden" problems to the doctor. Well, it may not be so much my ability to convey, but more so the doctors' ability to understand me in my descriptions, and believe what I am saying...and assist me in dealing with these problems.
I first met this doctor in January. I was referred to him by another neurologist...the referral was somewhat of a, "we're giving you the final say on this one", with a touch of, "we have no clue what to do with these test results". It was this doctor's job to decide if I have MS, and to tell me so.
I remember him asking me if I have had any new symptoms that lasted more than 24 hours, and I know that I started to answer him, and he lost his patience with me saying that I was confusing, and everyone was confused and that was why he was seeing me. He then said that the things the other neurologists had said weren't important, were important, and therefore, I do have MS. He then passed me a sheet of paper, told me to pick a drug, and come back when I had done so.
Let's leave out the next bit, and move on to our second encounter.
I then saw him again this past March. I had been in contact with the MS clinic because I had this ferocious bobble-head going on....for sometime. My head felt as if it was constantly moving. So an appointment was made for me to see the MS Pharmacist, who after spouting that it is his job to be ethical and helpful, walked out of the room on me, muttering that I wasn't describing vertigo. About five minutes later, he returned to the room with the doctor. After some tests and questions, he said that he could think of no lesions that would be causing my symptoms, and maybe they had missed something on previous MRIs. In the meantime, the pharmacist was asking my husband if my head ever shakes like someone with Parkinson's Disease.
An MRI was performed, and I never heard anything more from the doctor. But what else happened in the days immediately following this second visit is the grand finale. I was desperate for some relief. I think back now, and I don't know how I got through that period. I remember getting up in the middle of the night to feed Nike, sitting on a lawn chair in the basement while she ate, and my head felt as it was moving down, left, down, up, right, in, right, down, up...
I made phone calls to the MS Nurses, and left messages. I was told that if my issues were so troubling, that I should visit the emergency room, and wait and see a neurologist. Or maybe I should see a psychiatrist, because this could be all in my head. Well, I was so upset after that phone call, that I took .5 mg of Ativan to calm me down. Well, I don't know if it calmed me down, but it took away my bobble-head! And it did the next day too!
So I decided to make some adjustments to the nurses advice, and I phoned a neurologist instead. I explained both the situation and my remedy, and was met with, "Well of course Ativan works for you. It is a well documented vestibular suppressant. Anyone who is familiar with your file, would know that we are surprised that you don't have more problems like this". This is MY MS. The neurologist who only treats patients with MS, could not see my situation as something he had seen before, therefore, it could not be MS related.
How do I get the MS doctor to see that even though the pages appear to be upside down, it's still the same book that he reads everyday?
How do I get quality care?
How do I keep myself from saying that the level of care I have received in this MS Clinic is callous?
I just want my symptoms somewhat controlled, and a drug to slow the disease down that doesn't make me cry for seven months. Then I can get on with things.
Emily
I'm sure that sounds strange to you. I fully expect to pass all of the neurological tests that involve my reflexes and motor skills, and mostly pass the tests involving balance. I think that the original purpose of the appointment was to check in on how the medication was working.
What is making me nervous is my ability to convey my "hidden" problems to the doctor. Well, it may not be so much my ability to convey, but more so the doctors' ability to understand me in my descriptions, and believe what I am saying...and assist me in dealing with these problems.
I first met this doctor in January. I was referred to him by another neurologist...the referral was somewhat of a, "we're giving you the final say on this one", with a touch of, "we have no clue what to do with these test results". It was this doctor's job to decide if I have MS, and to tell me so.
I remember him asking me if I have had any new symptoms that lasted more than 24 hours, and I know that I started to answer him, and he lost his patience with me saying that I was confusing, and everyone was confused and that was why he was seeing me. He then said that the things the other neurologists had said weren't important, were important, and therefore, I do have MS. He then passed me a sheet of paper, told me to pick a drug, and come back when I had done so.
Let's leave out the next bit, and move on to our second encounter.
I then saw him again this past March. I had been in contact with the MS clinic because I had this ferocious bobble-head going on....for sometime. My head felt as if it was constantly moving. So an appointment was made for me to see the MS Pharmacist, who after spouting that it is his job to be ethical and helpful, walked out of the room on me, muttering that I wasn't describing vertigo. About five minutes later, he returned to the room with the doctor. After some tests and questions, he said that he could think of no lesions that would be causing my symptoms, and maybe they had missed something on previous MRIs. In the meantime, the pharmacist was asking my husband if my head ever shakes like someone with Parkinson's Disease.
An MRI was performed, and I never heard anything more from the doctor. But what else happened in the days immediately following this second visit is the grand finale. I was desperate for some relief. I think back now, and I don't know how I got through that period. I remember getting up in the middle of the night to feed Nike, sitting on a lawn chair in the basement while she ate, and my head felt as it was moving down, left, down, up, right, in, right, down, up...
I made phone calls to the MS Nurses, and left messages. I was told that if my issues were so troubling, that I should visit the emergency room, and wait and see a neurologist. Or maybe I should see a psychiatrist, because this could be all in my head. Well, I was so upset after that phone call, that I took .5 mg of Ativan to calm me down. Well, I don't know if it calmed me down, but it took away my bobble-head! And it did the next day too!
So I decided to make some adjustments to the nurses advice, and I phoned a neurologist instead. I explained both the situation and my remedy, and was met with, "Well of course Ativan works for you. It is a well documented vestibular suppressant. Anyone who is familiar with your file, would know that we are surprised that you don't have more problems like this". This is MY MS. The neurologist who only treats patients with MS, could not see my situation as something he had seen before, therefore, it could not be MS related.
How do I get the MS doctor to see that even though the pages appear to be upside down, it's still the same book that he reads everyday?
How do I get quality care?
How do I keep myself from saying that the level of care I have received in this MS Clinic is callous?
I just want my symptoms somewhat controlled, and a drug to slow the disease down that doesn't make me cry for seven months. Then I can get on with things.
Emily
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I have done some more research into the group behind the recommendation that the provincial governments not fund Tsyrabi. Here are some important points:
1. The Canadian Expert Drug Advisory Committee is a panel of individuals within the Canadian Agency For Drugs and Technologies in Health
2. The CADTH is owned by and reports directly to the 13 provincial/territorial Deputy Ministers of Health and the Federal Deputy Minister of Health
3. The original objective of the Canadian Drug review is to provide the provinces/territories with equal access in both a timely manner and identical information
4. The provinces/territories do not have to follow the recommendations of the committee, however, they do follow the recommendations more than 90% of the time, creating more consistent coverage across Canada
5. The CDR looks at the clinical and cost effectiveness of a drug compared to alternate therapies, and reviews if the drug provides good value to the system and improves health outcomes.
Now, the points that I think are important may not necessarily be the points that you think are important, so be sure to check this out on your own. All of this information is taken from this website:
http://www.cadth.ca/index.php/en/cdr
Last night I was trying to understand why the recommendation would come out to not fund Tsyrabi. I could understand if it was a horse of a different colour, or even a horse of a different breed - but I don't believe that it's a horse at all!
There are five Health Canada Approved drug therapies for the treatment of Relapsing-Remitting Multiple Sclerosis: 3 beta-interferons, 1 glatiramer, and 1 selective adhesion molecule inhibitor. Of the three interferons, there are two 1-a's and one 1-b.
Simply put, the interferons and the adhesion molecule inhibitor prevent inflammatory T-Cells from entering the central nervous system. While their purpose is similar, what they are made of (and from) and how they do their job is different. The glatiramer alters the make-up of the T-Cell, but still allows it to enter the CNS.
So they all work differently. The expected results of the interferons and the glatiramer is a 30%-35% reduction in the frequency of relapses and the severity of relapses. The expected results of the selective adhesion molecule inhibitor is greater than 50%.
***Ok, so I seem to be doing alot of rattling here...when in fact, if given the option, I am not sure if I would take the drug in question. I do, however, feel that should my neurologist and I decide that it is the best treatment for me, than I would hope that my provincial drug coverage would assist me in providing myself with what is best for my long term health and wellness. I would prefer to have their help now, so that I may not need it later.***
I'm not a doctor...I just play one in my own life,
Emily
1. The Canadian Expert Drug Advisory Committee is a panel of individuals within the Canadian Agency For Drugs and Technologies in Health
2. The CADTH is owned by and reports directly to the 13 provincial/territorial Deputy Ministers of Health and the Federal Deputy Minister of Health
3. The original objective of the Canadian Drug review is to provide the provinces/territories with equal access in both a timely manner and identical information
4. The provinces/territories do not have to follow the recommendations of the committee, however, they do follow the recommendations more than 90% of the time, creating more consistent coverage across Canada
5. The CDR looks at the clinical and cost effectiveness of a drug compared to alternate therapies, and reviews if the drug provides good value to the system and improves health outcomes.
Now, the points that I think are important may not necessarily be the points that you think are important, so be sure to check this out on your own. All of this information is taken from this website:
http://www.cadth.ca/index.php/en/cdr
Last night I was trying to understand why the recommendation would come out to not fund Tsyrabi. I could understand if it was a horse of a different colour, or even a horse of a different breed - but I don't believe that it's a horse at all!
There are five Health Canada Approved drug therapies for the treatment of Relapsing-Remitting Multiple Sclerosis: 3 beta-interferons, 1 glatiramer, and 1 selective adhesion molecule inhibitor. Of the three interferons, there are two 1-a's and one 1-b.
Simply put, the interferons and the adhesion molecule inhibitor prevent inflammatory T-Cells from entering the central nervous system. While their purpose is similar, what they are made of (and from) and how they do their job is different. The glatiramer alters the make-up of the T-Cell, but still allows it to enter the CNS.
So they all work differently. The expected results of the interferons and the glatiramer is a 30%-35% reduction in the frequency of relapses and the severity of relapses. The expected results of the selective adhesion molecule inhibitor is greater than 50%.
***Ok, so I seem to be doing alot of rattling here...when in fact, if given the option, I am not sure if I would take the drug in question. I do, however, feel that should my neurologist and I decide that it is the best treatment for me, than I would hope that my provincial drug coverage would assist me in providing myself with what is best for my long term health and wellness. I would prefer to have their help now, so that I may not need it later.***
I'm not a doctor...I just play one in my own life,
Emily
my comments on your comments
Posted in on by
If you have made a comment, check back in the comment area where you left it - I may have responded to you there. Unless I have alot to say, in which case I will post a new thread.
a new list
Posted in on by
As a follow-up to my post, "The Top Ten Reasons Why I Have MS" (from August 1), I thought that I would share with you:
"Why I Have MS and Jason Doesn't"
6. Jason makes more money than I do
5. Jason is more efficient on laundry day
4. Jason is more particular when it comes to folding the clean clothes
3. I have more experience with Fair and Carnival rides (moving floors, spinning buckets) making my ability to handle the exacerbations more fun
2. Jason never enjoys being the passenger in a car
and the number one reason why I have MS and Jason doesn't...
"Why I Have MS and Jason Doesn't"
6. Jason makes more money than I do
5. Jason is more efficient on laundry day
4. Jason is more particular when it comes to folding the clean clothes
3. I have more experience with Fair and Carnival rides (moving floors, spinning buckets) making my ability to handle the exacerbations more fun
2. Jason never enjoys being the passenger in a car
and the number one reason why I have MS and Jason doesn't...
1. Jason is better at making me laugh at any given time than I am at making him laugh
Excuse me while I go and look for my Jason...
Emily
dangling carrots
Posted in on by
Breaking news - in case you don't read the health section of your daily newspaper -
Provincal governments urged NOT to reimburse for promising new MS therapy!
http://www.winnipegfreepress.com/subscriber/health/story/4057859p-4662400c.html
I was made aware of this decision earlier this week while reading a free publication on MS that I receive in the mail (msdialogue is also available online at http://www.mswatch.ca/).
The article that I read provided a bit more information on the group behind the decision. The Canadian Expert Drug Advisory Committee (CDEAC) established the Common Drug Review (CDR) process in 2002. The CDEAC reports to the Canadian Agency for Drugs and Technologies in Health. The CDR assess the safety, effectiveness, and cost -effectiveness of new therapies compared with existing ones. The committee is comprised of physicians, pharmacologists, health economists and members of the public. Of the physicians on the committee, none are neurologists.
Here is a breakdown of what the various drugs cost per year:
$16 000 for glatiramer acetate (also known as Copaxone)
$18 000 - $22 000 for beta-interferons
$33 700 for natalizumab (also known as Tsyabri)
Some provinces MAY provide some reimbursement if a doctor submits a special request.
Ok - so what do I think of all this?
I am at the beginning of my journey, and I have already ruled out one treatment. What is the sense in having a list of effective drugs that aren't covered by the government? It isn't as if the patient goes to the pharmacy, buys the drug and then sends a bill to the government, demanding re-reimbursement.
A doctor must first prescribe the drug, and then an application is submitted to the provincial government for partial funding. Not every patient is going to be on Tsyabri - it isn't like buying candy. The doctor has to believe that it is the best treatment for that patient, and in some cases, it may be the last treatment to try. No drug will halt this disease in it's path - we only hope to slow the progression. How can that be denied?
Health Canada approved Tsyabri based on positive results from two clinical trials. "The largest study, the AFFIRM clinical trial, involved 942 people with relapsing-remitting MS and evaluated the effect of Tysabri on the rate of clinical relapses and the progression of disability. The study found Tysabri reduced the rate of clinical relapse by 68 percent compared to placebo and the risk of disability progression was reduced by 42 percent as a primary end point compared to placebo. It also had a statistically significant reduction in the number and size of active brain lesions identified on magnetic resonance imaging (MRI) scans. "*
Glatiramer Acetate and Beta-Interferons can reduce the rate of clinical relapse by about 30%.
Two tiered health care - dangling carrots for the wealthy.
Sigh,
Emily
*This was taken from the Multiple Sclerosis Society of Canada website. See the full article here:
http://www.mssociety.ca/en/research/DMT061004.htm
Provincal governments urged NOT to reimburse for promising new MS therapy!
http://www.winnipegfreepress.com/subscriber/health/story/4057859p-4662400c.html
I was made aware of this decision earlier this week while reading a free publication on MS that I receive in the mail (msdialogue is also available online at http://www.mswatch.ca/).
The article that I read provided a bit more information on the group behind the decision. The Canadian Expert Drug Advisory Committee (CDEAC) established the Common Drug Review (CDR) process in 2002. The CDEAC reports to the Canadian Agency for Drugs and Technologies in Health. The CDR assess the safety, effectiveness, and cost -effectiveness of new therapies compared with existing ones. The committee is comprised of physicians, pharmacologists, health economists and members of the public. Of the physicians on the committee, none are neurologists.
Here is a breakdown of what the various drugs cost per year:
$16 000 for glatiramer acetate (also known as Copaxone)
$18 000 - $22 000 for beta-interferons
$33 700 for natalizumab (also known as Tsyabri)
Some provinces MAY provide some reimbursement if a doctor submits a special request.
Ok - so what do I think of all this?
I am at the beginning of my journey, and I have already ruled out one treatment. What is the sense in having a list of effective drugs that aren't covered by the government? It isn't as if the patient goes to the pharmacy, buys the drug and then sends a bill to the government, demanding re-reimbursement.
A doctor must first prescribe the drug, and then an application is submitted to the provincial government for partial funding. Not every patient is going to be on Tsyabri - it isn't like buying candy. The doctor has to believe that it is the best treatment for that patient, and in some cases, it may be the last treatment to try. No drug will halt this disease in it's path - we only hope to slow the progression. How can that be denied?
Health Canada approved Tsyabri based on positive results from two clinical trials. "The largest study, the AFFIRM clinical trial, involved 942 people with relapsing-remitting MS and evaluated the effect of Tysabri on the rate of clinical relapses and the progression of disability. The study found Tysabri reduced the rate of clinical relapse by 68 percent compared to placebo and the risk of disability progression was reduced by 42 percent as a primary end point compared to placebo. It also had a statistically significant reduction in the number and size of active brain lesions identified on magnetic resonance imaging (MRI) scans. "*
Glatiramer Acetate and Beta-Interferons can reduce the rate of clinical relapse by about 30%.
Two tiered health care - dangling carrots for the wealthy.
Sigh,
Emily
*This was taken from the Multiple Sclerosis Society of Canada website. See the full article here:
http://www.mssociety.ca/en/research/DMT061004.htm
big baby steps
Posted in on by
I have heard that the only reason people blog is for other people to read it. I have heard that blogging is a form of journaling. I have heard that blogging is for self-obsessed people who want everyone to know everything about them. Whatever.
I now feel the need to remind myself why I am blogging. I feel as if the last few posts have been solely about MS, and I have been feeling some self-imposed pressure to write about something else.
But wait a minute - I'm blogging so that I can better process the things that are happening in my life right now. I'm openly blogging about my experience with a disease that many people will admit to not knowing alot about. I'm blogging to maintain contact with my friends and family.
Ok, sounds good.
Today, I took a big baby step. Well, no, I took 2 big baby steps. Let me tell you about them...
Five weeks before I became ill, I joined a gym. I recall starting my work-outs with a bang, and they quickly fell off (especially when I stumbled off a step platform, and into a machine...no joke!). For now obvious reasons, I could not continue at the gym. A medical hold was placed on my file...and I re-joined today!
Jason has been pushing me for months to go back and come up with an exercise regimen that meets my needs...and more importantly, meets my strengths. I have been reluctant for many reasons, but I finally feel ready to start moving my muscles...re-introducing full movement back to all my limbs (is the neck a limb?). Jason wants me to get out of the house more often.
That was big baby step numero uno.
On may home from the gym, I stopped in at the grocery store. whoa. I had a small list of things to pick up - and purpose in my steps. I have been to the grocery store...zero times... by myself in the past 20 months. And I would just like to say that it was uneventful.
Cheers!
Emily
I now feel the need to remind myself why I am blogging. I feel as if the last few posts have been solely about MS, and I have been feeling some self-imposed pressure to write about something else.
But wait a minute - I'm blogging so that I can better process the things that are happening in my life right now. I'm openly blogging about my experience with a disease that many people will admit to not knowing alot about. I'm blogging to maintain contact with my friends and family.
Ok, sounds good.
Today, I took a big baby step. Well, no, I took 2 big baby steps. Let me tell you about them...
Five weeks before I became ill, I joined a gym. I recall starting my work-outs with a bang, and they quickly fell off (especially when I stumbled off a step platform, and into a machine...no joke!). For now obvious reasons, I could not continue at the gym. A medical hold was placed on my file...and I re-joined today!
Jason has been pushing me for months to go back and come up with an exercise regimen that meets my needs...and more importantly, meets my strengths. I have been reluctant for many reasons, but I finally feel ready to start moving my muscles...re-introducing full movement back to all my limbs (is the neck a limb?). Jason wants me to get out of the house more often.
That was big baby step numero uno.
On may home from the gym, I stopped in at the grocery store. whoa. I had a small list of things to pick up - and purpose in my steps. I have been to the grocery store...zero times... by myself in the past 20 months. And I would just like to say that it was uneventful.
Cheers!
Emily
one week later
Posted in on byIt has been a week since my last Copaxone injection. For as committed as I was (and Jason too) to doing that needle every day...we don't miss it at all.
There were no accidental openings of the fridge to remove the needle hours prior to injection.
There weren't any panicked cries of, "CRAP...we forgot the needle!"
There weren't any tears shed.
I am still working on getting my skin back in order: massaging out the tiny hard patches just under the skin, and massaging the achy spots in all six injection areas.
Another "medical mystery" was also solved this week. My hair has been falling out quite rapidly for the past five months. I didn't know what to attribute it to. I asked the Copaxone Support Nurse if loss of hair was ever reported as an issue for patients, and she said not of any significance.
My own diagnosis is that I was losing my hair as my body's response to trauma...because now, it has stopped.
Oh yes, one more thing...I had a dream yesterday that involved a yet to happen MRI. I don't know when the scan will be, but according to my dream...my brain will be LESION FREE!
WooHoo!
Emily
a dedication to my Fryer Family
Posted in on by
Thanksgiving week-end...here it is again. I have been here in Winnipeg for six and a half years now, and I still miss my Fryer-family...our Fryer-traditions...even more on the holidays.
Since I came here, Fryer-traditions have obviously changed...so what could I really be missing?
First off, there is the addition of two mini Charette-Fryer's: Nickel and 2Penny. The great thing about them, is that they bring new things, but at the same time, they meld so well with the old.
Returning to the house that I grew up in, or my last old bedroom is no longer an option. But Grandma and Grandpa Fryer's good china, and Ladyfingers and D's good china is still around...and I remember that the most because we have to do the dishes by hand when we use them!
Turkey, mashed potatoes, gravy, a bun, and some veggies...I can get that just about anywhere. But I can't get it with the stress that is created at the same time as the food...preparation of a Fryer meal has always had a bit of tension...and the food isn't the same without it!
But the best part of a Fryer holiday week-end (other than the countless games of cards: Oh Hell, Conasta-does-anyone-know-where-moms'-card-holder-is?, Euchre), what I miss the most, is the people. A small gathering of the people who know you the best: people who know about your dreams, your struggles, and your achievements. Your inner-circle, your peeps, your rocks, your challengers, your "how are you?" and meaning its.
Thank you for family.
Emily
Since I came here, Fryer-traditions have obviously changed...so what could I really be missing?
First off, there is the addition of two mini Charette-Fryer's: Nickel and 2Penny. The great thing about them, is that they bring new things, but at the same time, they meld so well with the old.
Returning to the house that I grew up in, or my last old bedroom is no longer an option. But Grandma and Grandpa Fryer's good china, and Ladyfingers and D's good china is still around...and I remember that the most because we have to do the dishes by hand when we use them!
Turkey, mashed potatoes, gravy, a bun, and some veggies...I can get that just about anywhere. But I can't get it with the stress that is created at the same time as the food...preparation of a Fryer meal has always had a bit of tension...and the food isn't the same without it!
But the best part of a Fryer holiday week-end (other than the countless games of cards: Oh Hell, Conasta-does-anyone-know-where-moms'-card-holder-is?, Euchre), what I miss the most, is the people. A small gathering of the people who know you the best: people who know about your dreams, your struggles, and your achievements. Your inner-circle, your peeps, your rocks, your challengers, your "how are you?" and meaning its.
October 1977
Thank you for family.
Emily
continued from my previous post
Posted in on by
When I hung up the phone with the MS nurse on Monday, I did still go to the fridge and remove my needle for that evening. But I have not had any needles since Sunday night.
I am also cutting back on the pills that I take for my "head in relation to space" problems. In particular, I am cutting back, and hopefully eliminating the Lorazepam (also know as Ativan) from my daily schedule.
This is, again, my own decision, and I came to it for many reasons. Most importantly, I want to know how well I can function without the pills...am I able to control my situations...stop when I should stop?
I am also assuming that a time will come again when my head is really, really bad and I will want the pills then. So rather than having to increase the dose, I would prefer to start over. I also knew going in to it, that Lorazepam/Ativan can be habit forming...and despite what some people told me, having MS is not an excuse to become addicted to something like that.
Going for a nap...
Emily
I am also cutting back on the pills that I take for my "head in relation to space" problems. In particular, I am cutting back, and hopefully eliminating the Lorazepam (also know as Ativan) from my daily schedule.
This is, again, my own decision, and I came to it for many reasons. Most importantly, I want to know how well I can function without the pills...am I able to control my situations...stop when I should stop?
I am also assuming that a time will come again when my head is really, really bad and I will want the pills then. So rather than having to increase the dose, I would prefer to start over. I also knew going in to it, that Lorazepam/Ativan can be habit forming...and despite what some people told me, having MS is not an excuse to become addicted to something like that.
Going for a nap...
Emily
here is what happened
Posted in on by
"I wish that I had known about this sooner".
Those were the words spoken today by the MS Clinic nurse when I told her about my injection troubles.
She asked me a number of questions about technique, prep, follow-up, and location, and concluded that I have "more than done my penance" with this drug.
I can't get in to see my doctor any earlier than October 22, but I can stop the drug immediately. Those words, "you can stop it right now" sent a whole jumbled up wave of emotions through me.
The nurse said that while the drug Copaxone boasts no side effects, the pain is not uncommon, however, it does usually go away...obviously not in my case.
So now I may have to make some decisions. I'm not sure why I am using the word "may". Here is the situation, as outlined by the nurse (the doctor may think differently):
I have the option of Tsyrabi - it is still not covered by Pharmacare (Manitoba Health) but some drug plans do cover it. I'm not sure if my plan will or not. If my plan does cover it, it will be 80%...and I can't afford the rest. It is the drug administered once a month by an infusion...I have heard good things about it..."night and day" daily living when compared to the other drugs.
We have the option of re-visiting the beta-interferons which I was not allowed to take from the beginning because of my elevated liver enzymes. So if my liver enzymes are elevated for what is considered a "benign" reason (which I'm sure they are...considering the liver doctor never followed up with me after the tests and ultrasounds) - then I may be able to take them. However, beta-interferons can have an affect on the liver (I would have monthly blood tests to monitor my liver)...so it depends on how high they are if the doctor wants to take that risk.
I have "sacrificed my quality of life for too long"...so why am I afraid to stop the Copaxone until I have something else in place? There is no need for a rest in between drugs - unless one of the drugs is Tsyrabi.
Hesitantly relieved,
Emily
Those were the words spoken today by the MS Clinic nurse when I told her about my injection troubles.
She asked me a number of questions about technique, prep, follow-up, and location, and concluded that I have "more than done my penance" with this drug.
I can't get in to see my doctor any earlier than October 22, but I can stop the drug immediately. Those words, "you can stop it right now" sent a whole jumbled up wave of emotions through me.
The nurse said that while the drug Copaxone boasts no side effects, the pain is not uncommon, however, it does usually go away...obviously not in my case.
So now I may have to make some decisions. I'm not sure why I am using the word "may". Here is the situation, as outlined by the nurse (the doctor may think differently):
I have the option of Tsyrabi - it is still not covered by Pharmacare (Manitoba Health) but some drug plans do cover it. I'm not sure if my plan will or not. If my plan does cover it, it will be 80%...and I can't afford the rest. It is the drug administered once a month by an infusion...I have heard good things about it..."night and day" daily living when compared to the other drugs.
We have the option of re-visiting the beta-interferons which I was not allowed to take from the beginning because of my elevated liver enzymes. So if my liver enzymes are elevated for what is considered a "benign" reason (which I'm sure they are...considering the liver doctor never followed up with me after the tests and ultrasounds) - then I may be able to take them. However, beta-interferons can have an affect on the liver (I would have monthly blood tests to monitor my liver)...so it depends on how high they are if the doctor wants to take that risk.
I have "sacrificed my quality of life for too long"...so why am I afraid to stop the Copaxone until I have something else in place? There is no need for a rest in between drugs - unless one of the drugs is Tsyrabi.
Hesitantly relieved,
Emily
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