Shortly after I began my doctoral studies, I started experiencing problems with my vision which were accompanied by unusual headaches. Having been in a car accident which caused whiplash, I was seeing a chiropractor. However, when my headaches didn’t improve, I visited the campus Eye Clinic (part of the School of Optometry) for evaluation.
For my entire life up to this point, I had only visited one eye clinic for all my care. I had been a patient in the same doctor’s office since I was 4 years old. This was my first time to be examined by anybody I didn’t know. Very interesting to have both students and professionals examine my eyes. I was quite the guinea pig in the campus Eye Clinic.
One thing which concerned the doctors was that my pupils were of different sizes. They wanted to know if my pupils had always been that way. I wasn’t really even aware of the issue, having not noticed the difference in my own reflexion. Since I couldn’t answer the question, they wanted to see photos of me from various years to see if my pupils had always appeared to be different sizes.
Read this post in its entirety:
MS Signs vs. Symptoms: What is Anisocoria?
Monday, February 28, 2011
Saturday, February 26, 2011
"Duetto buffo di due Gatti"
Performance by Les Petits chanteurs a la croix de bois in Seoul, Korea, Nov 30, 1996.
Performance by Montserrat Caballe and Montserrat Marti (mother and daughter duo), operatic sopranos from Spain.
Review and Notes on the "Cat Duet" by Rossini
Performance by Montserrat Caballe and Montserrat Marti (mother and daughter duo), operatic sopranos from Spain.
Review and Notes on the "Cat Duet" by Rossini
"Many are the vocal recitals and opera galas that have ended with the Cat Duet as an encore. Though scored for two sopranos and piano, the work exists in orchestral versions and has been sung by male-female pairs and even as a tomcat duet. The text consists in its entirety of the single word "meow," and singers treat the melodies basically however they want to. The origins of this work are cloudy, but historians agree that it is not an authentic work by Rossini. It does, however, contain a good deal of Rossini's music, so the attribution is not completely off the mark.
The Cat Duet contains elements of 1) the aria "Ah, come mai non senti," from the second act of Rossini's opera Otello (1816), 2) a nearby duet between the characters Otello and Iago, and 3) an earlier work in the same vein, the "Cat Cavatina" of Danish opera and song composer C.E.F. Weyse. The compiler was probably Robert Lucas Pearsall, a British composer better known for his output of hymns. In 1973, the Schott publishing house issued a facsimile of an 1825 edition of the Cat Duet, published by Ewer & Johanning and credited to Pearsall, but bearing the pseudonym G. Berthold. From Rossini's day down to ours, the piece has never lost its appeal for singers, concertgoers, and cat lovers; it often appears, of course, on compilations of classical music pertaining to felines." ~ James Manheim, RoviIf you'd like to see what the melody looks like on paper, check out this score of the Comic Duet for Two Cats.
Thursday, February 24, 2011
Standing, Sitting, Hovering
Some of my piano students have become advanced and study music which is appropriately challenging. This leads to songs and Sonatas which are several pages long.
During lessons, I sit to the left of the piano student. When necessary I will turn the page for the performer during lessons so as to help avoid that ingrained pause which accompanies the solo practice at home (when you don't have a personal page turner at the ready).
There have been times when this was actually a challenging task. For quite some time, my knees were loud, creaky joints which did all sorts of popping, crackling, and moaning. After the steroid injection in October for the Spurs which were A Janglin' and the inflammation which made stairs impossible, my knees have been happy.
It was just about three years ago that I could hardly rise from a seated position. I had to push off of chair arms and seat cushions while also pulling on the coffee table or piano box. My legs were becoming annoyingly unresponsive to the "stand now! rise up!" mental instructions.
MS was to blame for the breakdown in nerve-muscle communication. However, it was thrilling on my 5th day of Solumedrol when I could get up out of a chair without having to shift most of my weight over my feet and walk my hands up my legs. This was first time I had rejoined the MS party (meaning I was finally breaking down the denial that I was in a relapse) since I had started blogging. I also had new cervical lesions to go with the wimpy legs.
So why is this trip down memory lane happening right now?
I realized on Monday that I stood up from my teaching chair rather quickly and strongly to turn a page of music. I didn't pull on the piano. I didn't replant my feet and think about pushing into the ground. I didn't push the seat of the chair with one hand. I didn't even push off of the piano bench nearby.
I simply stood!
Now how cool is that?! It was one of those moments where you appreciate something which may have been there for a little while but you just hadn't noticed.
I tested it out again just now, standing up from the sofa (which is a bit lower and squishier than my teaching chairs in the studio). I stood again without much trouble at all. The only noticeable annoyance is the crackling noise I get when I sit back down. The mild osteoarthritis in my knees doesn't want to stay quiet. However, those knees are quiet on the way up which is still very cool.
Now, it's not like I haven't stood for three years. It has just been an ever-present weakness. However, with this newly-noticed ability, I have no excuse to not exercise those thighs and butt by slowing standing and sitting. I can do the "public bathroom hover" which we women learned from our mothers so many years ago.
I think I gotta check it out again. Yep, those legs are working. Now I can't get too crazy cause once I'm up I'm still a bit wavering with the balance. Still no standing with the eyes closed for me. No sirree, I'm not feeling that ambitious. :)
During lessons, I sit to the left of the piano student. When necessary I will turn the page for the performer during lessons so as to help avoid that ingrained pause which accompanies the solo practice at home (when you don't have a personal page turner at the ready).
There have been times when this was actually a challenging task. For quite some time, my knees were loud, creaky joints which did all sorts of popping, crackling, and moaning. After the steroid injection in October for the Spurs which were A Janglin' and the inflammation which made stairs impossible, my knees have been happy.
It was just about three years ago that I could hardly rise from a seated position. I had to push off of chair arms and seat cushions while also pulling on the coffee table or piano box. My legs were becoming annoyingly unresponsive to the "stand now! rise up!" mental instructions.
MS was to blame for the breakdown in nerve-muscle communication. However, it was thrilling on my 5th day of Solumedrol when I could get up out of a chair without having to shift most of my weight over my feet and walk my hands up my legs. This was first time I had rejoined the MS party (meaning I was finally breaking down the denial that I was in a relapse) since I had started blogging. I also had new cervical lesions to go with the wimpy legs.
So why is this trip down memory lane happening right now?
I simply stood!
Now how cool is that?! It was one of those moments where you appreciate something which may have been there for a little while but you just hadn't noticed.
I tested it out again just now, standing up from the sofa (which is a bit lower and squishier than my teaching chairs in the studio). I stood again without much trouble at all. The only noticeable annoyance is the crackling noise I get when I sit back down. The mild osteoarthritis in my knees doesn't want to stay quiet. However, those knees are quiet on the way up which is still very cool.
Now, it's not like I haven't stood for three years. It has just been an ever-present weakness. However, with this newly-noticed ability, I have no excuse to not exercise those thighs and butt by slowing standing and sitting. I can do the "public bathroom hover" which we women learned from our mothers so many years ago.
I think I gotta check it out again. Yep, those legs are working. Now I can't get too crazy cause once I'm up I'm still a bit wavering with the balance. Still no standing with the eyes closed for me. No sirree, I'm not feeling that ambitious. :)
Tuesday, February 22, 2011
How Much Medication is Your Autoinjection Device Delivering?
Sometime last year, I remember discussion online about a new autoinjection device for Rebif. It was set-up so that you didn't even need to see the needles and several doses were included in one device. Rebif isn't the only MS medication which offers an option aside from manual injection.
Medications for RA also have similar autoinjection devices, however they are more commonly referred to as "pens." Simponi is one such medication which is available in a pre-filled syringe which you would manually inject or a pre-filled pen which delivers the medication.
Last week, Johnson & Johnson (makers of Simponi) have recalled two lots of pre-filled pens due to the potential delivery of reduced doses. I assume that they mean not all of the medication gets injected. The European Medicines Agency released a Q&A paper regarding the recalled Simponi pens. You can read the Reuters article below.
When I first started using Copaxone, I used the injection device. It is simply how my MS nurse taught me to inject. There was one period of time where I would think the injection was complete, but when I removed the device more medication would squirt out. I thought that the spring on my autoinjector was wearing out so I started injecting manually. I later discovered that there were a few lots of syringes in which the rubber stoppers were too stiff and provided too much resistance for the device. I continued to inject manually until I stopped using Copaxone in October 2009.
I do not use Simponi and do not have an opinion on the medication itself. I just find the topic of autoinjection devices interesting and wanted to share the news.
J&J recalls two lots of Simponi injection devices
Fri Feb 18, 2011 2:27pm EST
* Injection devices may deliver less than full dose
* No problems found with medicine
* 165 in U.S., 230 in Europe being recalled from market
By Bill Berkrot
NEW YORK, Feb 18 (Reuters) - Johnson & Johnson (JNJ.N) said it has recalled two lots of Simponi injection devices -- one in the United States and one in Europe -- after discovering they may deliver less than a full dose of the rheumatoid arthritis medicine.
The potential defect was discovered by the company during regular quality testing and the voluntary recall was initiated earlier this week.
J&J, which has been beset by recalls of more than 250 million bottles of its consumer healthcare medicines as well as other products due to manufacturing and quality control problems, has stepped up inspections at plants across its business universe.
"There is no issue with the Simponi drug product. It is merely the drug delivery device that has a manufacturing issue," Monica Neufang, a business communications spokeswoman for J&J, said of the latest recall.
From the affected U.S. lot of 839 pre-filled injection devices, nearly 80 percent were quarantined at the wholesaler level, the company said of the recall.
"We're working with wholesalers and distributors to recapture the remaining 165 affected units that are in the market," Neufang said.
The percentage fail rate among the affected injection devices is 0.5 percent, the company said.
"If you apply that rate to the 165 units, potentially one device in the marketplace has a defect," Neufang said.
The pre-filled injection devices were manufactured at J&J's Janssen Biologics plant in Switzerland.
The affected lot in Europe was discovered in Germany during part of ongoing quality checks, J&J spokesman Brian Kenney said.
From that lot, 1,890 units were quarantined as a precaution and 230 units made it to market and are being recalled, Kenney said.
J&J is working with Merck & Co (MRK.N), which holds European sales rights to Simponi, to make sure healthcare professionals in Germany are aware of the recall, he added. (Reporting by Bill Berkrot, editing by Gerald E. McCormick)
Medications for RA also have similar autoinjection devices, however they are more commonly referred to as "pens." Simponi is one such medication which is available in a pre-filled syringe which you would manually inject or a pre-filled pen which delivers the medication.
Last week, Johnson & Johnson (makers of Simponi) have recalled two lots of pre-filled pens due to the potential delivery of reduced doses. I assume that they mean not all of the medication gets injected. The European Medicines Agency released a Q&A paper regarding the recalled Simponi pens. You can read the Reuters article below.
When I first started using Copaxone, I used the injection device. It is simply how my MS nurse taught me to inject. There was one period of time where I would think the injection was complete, but when I removed the device more medication would squirt out. I thought that the spring on my autoinjector was wearing out so I started injecting manually. I later discovered that there were a few lots of syringes in which the rubber stoppers were too stiff and provided too much resistance for the device. I continued to inject manually until I stopped using Copaxone in October 2009.
I do not use Simponi and do not have an opinion on the medication itself. I just find the topic of autoinjection devices interesting and wanted to share the news.
J&J recalls two lots of Simponi injection devices
Fri Feb 18, 2011 2:27pm EST
* Injection devices may deliver less than full dose
* No problems found with medicine
* 165 in U.S., 230 in Europe being recalled from market
By Bill Berkrot
NEW YORK, Feb 18 (Reuters) - Johnson & Johnson (JNJ.N) said it has recalled two lots of Simponi injection devices -- one in the United States and one in Europe -- after discovering they may deliver less than a full dose of the rheumatoid arthritis medicine.
The potential defect was discovered by the company during regular quality testing and the voluntary recall was initiated earlier this week.
J&J, which has been beset by recalls of more than 250 million bottles of its consumer healthcare medicines as well as other products due to manufacturing and quality control problems, has stepped up inspections at plants across its business universe.
"There is no issue with the Simponi drug product. It is merely the drug delivery device that has a manufacturing issue," Monica Neufang, a business communications spokeswoman for J&J, said of the latest recall.
From the affected U.S. lot of 839 pre-filled injection devices, nearly 80 percent were quarantined at the wholesaler level, the company said of the recall.
"We're working with wholesalers and distributors to recapture the remaining 165 affected units that are in the market," Neufang said.
The percentage fail rate among the affected injection devices is 0.5 percent, the company said.
"If you apply that rate to the 165 units, potentially one device in the marketplace has a defect," Neufang said.
The pre-filled injection devices were manufactured at J&J's Janssen Biologics plant in Switzerland.
The affected lot in Europe was discovered in Germany during part of ongoing quality checks, J&J spokesman Brian Kenney said.
From that lot, 1,890 units were quarantined as a precaution and 230 units made it to market and are being recalled, Kenney said.
J&J is working with Merck & Co (MRK.N), which holds European sales rights to Simponi, to make sure healthcare professionals in Germany are aware of the recall, he added. (Reporting by Bill Berkrot, editing by Gerald E. McCormick)
Monday, February 21, 2011
Signs of Nerve Damage Seen in the Pupils of the Eyes
One test which my neurologist, opthalmologist, and primary care doctor each conduct during every office visit is the “swinging flashlight test.” You know the one. The doctor asks you to look ahead then shines a penlight first toward one eye, then the other, alternating quickly to observe your pupils’ response to light.
I strangely enjoy this test because I know that my pupils will show something unique. Something which proves that I have damage to my optic nerve. My pupils show a Relative Afferent Pupillary Defect (RAPD) or Marcus Gunn Sign.
What does the doctor look for during the “swinging light test”?
The pupils (the black centers of the eyes which dilate or constrict in response to light) are inspected for size, equality, and regularity. Did you know that the pupils will constrict or dilate when you look at objects far or near? They do, which is kinda cool.
More importantly, each pupil should constrict quickly and equally during exposure to direct light and to light directed at the other pupil (the consensual light reflex). Using the swinging light test, the doctor can test and observe the pupillary response to consensual light in order to determine if there is a defect present.
Normally, the pupil constriction does not change as the light is swung from eye to eye. When the light is moved quickly from eye to eye, both pupils should hold their degree of constriction.
Read this post in its entirety:
MS Signs vs. Symptoms: What is a Marcus Gunn Pupil?
I strangely enjoy this test because I know that my pupils will show something unique. Something which proves that I have damage to my optic nerve. My pupils show a Relative Afferent Pupillary Defect (RAPD) or Marcus Gunn Sign.
What does the doctor look for during the “swinging light test”?
The pupils (the black centers of the eyes which dilate or constrict in response to light) are inspected for size, equality, and regularity. Did you know that the pupils will constrict or dilate when you look at objects far or near? They do, which is kinda cool.
More importantly, each pupil should constrict quickly and equally during exposure to direct light and to light directed at the other pupil (the consensual light reflex). Using the swinging light test, the doctor can test and observe the pupillary response to consensual light in order to determine if there is a defect present.
Normally, the pupil constriction does not change as the light is swung from eye to eye. When the light is moved quickly from eye to eye, both pupils should hold their degree of constriction.
Read this post in its entirety:
MS Signs vs. Symptoms: What is a Marcus Gunn Pupil?
Sunday, February 20, 2011
Updates to the Website and Welcomes
I want to welcome all of the new visitors on the blog who have come by way of Marc's blog, the Wheelchair Kamikaze. I hope that you will subscribe and enjoy your time here at Brass and Ivory.
Speaking of spending time on the blog, I have rearranged and updated the MS Bloggers page. Snippets and links to the 25 most recent posts in the community can be seen in the larger section of the page.
Note how prolific the MS blogging community is - the 25 most recent posts only take us back 22 hours. That's a lot of writing....and reading.
The full lists of MS blogs are now located on the right-hand sidebar. For each alphabet letter, the 5 most recent blogs are shown. To expand the lists, click on 'view all.'
Don't forget. If you have a blog you wish to be listed, please contact me. If you have a blog post you wish to be featured in the Carnival of MS Bloggers, please send me a link.
Thanks!
Speaking of spending time on the blog, I have rearranged and updated the MS Bloggers page. Snippets and links to the 25 most recent posts in the community can be seen in the larger section of the page.
Note how prolific the MS blogging community is - the 25 most recent posts only take us back 22 hours. That's a lot of writing....and reading.
The full lists of MS blogs are now located on the right-hand sidebar. For each alphabet letter, the 5 most recent blogs are shown. To expand the lists, click on 'view all.'
Don't forget. If you have a blog you wish to be listed, please contact me. If you have a blog post you wish to be featured in the Carnival of MS Bloggers, please send me a link.
Thanks!
Saturday, February 19, 2011
Heat Slows the MS Brain
My closest loved ones know that my brain is worthless mush when I get overheated. I turn into a seemingly less than intelligent individual. I can't think straight. I can't make decisions. Everything slows down to the consistency of molasses.
Now there is research which proves my MS is to blame for this heat-inspired drudgery. But, you know, I already blamed MS because my legs become severely weakened in the warm weather as well. I end up walking through quicksand with 50lb weights attached. Quite a feat of strength, I must say.
Below is the announcement coming from the American Academy of Neurology. I really wish that I could attend the annual meeting which happens to be in Honolulu this year. Anybody wanna send me? Pay my way? Hopefully the heat would not slow down the brain too much. :)
Warm Weather May Hurt Thinking Skills in People with MS
ST. PAUL, Minn. – People with multiple sclerosis (MS) may find it harder to learn, remember or process information on warmer days of the year, according to new research released today that will be presented at the American Academy of Neurology’s 63rd Annual Meeting in Honolulu April 9 to April 16, 2011.
“Studies have linked warmer weather to increased disease activity and lesions in people with MS, but this is the first research to show a possible link between warm weather and cognition, or thinking skills, in people with the disease,” said study author Victoria Leavitt, PhD, with the Kessler Foundation in West Orange, New Jersey.
For the study, 40 people with MS and 40 people without MS were given tests that measured learning, memory and the speed at which they processed information. Those people with MS also underwent brain scans. The daily temperature on the days the tests were taken was also recorded.
The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS.
“With more research, this information might help guide people with MS in life decisions and their doctors with clinical treatment. Scientists may also consider the effect of warmer weather on cognition when conducting clinical trials,” said Leavitt.
The American Academy of Neurology, an association of more than 22,500 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, brain injury, epilepsy and Parkinson’s disease. For more information about the American Academy of Neurology and its upcoming Annual Meeting, visit http://www.aan.com.
Now there is research which proves my MS is to blame for this heat-inspired drudgery. But, you know, I already blamed MS because my legs become severely weakened in the warm weather as well. I end up walking through quicksand with 50lb weights attached. Quite a feat of strength, I must say.
Below is the announcement coming from the American Academy of Neurology. I really wish that I could attend the annual meeting which happens to be in Honolulu this year. Anybody wanna send me? Pay my way? Hopefully the heat would not slow down the brain too much. :)
~~~~~~~~~~
Warm Weather May Hurt Thinking Skills in People with MS
ST. PAUL, Minn. – People with multiple sclerosis (MS) may find it harder to learn, remember or process information on warmer days of the year, according to new research released today that will be presented at the American Academy of Neurology’s 63rd Annual Meeting in Honolulu April 9 to April 16, 2011.
“Studies have linked warmer weather to increased disease activity and lesions in people with MS, but this is the first research to show a possible link between warm weather and cognition, or thinking skills, in people with the disease,” said study author Victoria Leavitt, PhD, with the Kessler Foundation in West Orange, New Jersey.
For the study, 40 people with MS and 40 people without MS were given tests that measured learning, memory and the speed at which they processed information. Those people with MS also underwent brain scans. The daily temperature on the days the tests were taken was also recorded.
The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS.
“With more research, this information might help guide people with MS in life decisions and their doctors with clinical treatment. Scientists may also consider the effect of warmer weather on cognition when conducting clinical trials,” said Leavitt.
The American Academy of Neurology, an association of more than 22,500 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, brain injury, epilepsy and Parkinson’s disease. For more information about the American Academy of Neurology and its upcoming Annual Meeting, visit http://www.aan.com.
Friday, February 18, 2011
More Tysabri-Related PML Deaths, Up to 20 Now
The subject of Tysabri and Progressive Multifocal Leukoencelopathy (PML) has begun to receive more and more media coverage in the past couple of months. It was under a year ago that Biogen and Elan (the pharmaceutical companies who make and market Tysabri) stopped giving monthly reports directly to the public.
'They' likely decided that filtering that information through the neurologists (in the TOUCH program) would be wiser, perhaps for them anyways. Fortunately though, a small group of news media outlets are given the reports to release to the public. The Wall Street Journal (owned by Dow Jones & Company) has been dutifully providing us with the monthly updates. A history of the press releases are compiled by the Multiple Sclerosis Resource Centre.
I've written previously about Tysabri and PML, with a lengthier discussion of the topic at HealthCentral. Use the search box located half-way down the sidebar to find older posts as well.
I'm wondering when somebody is going to finally notice that in one year's time, 60 new cases of PML have been reported. 60!! Last February the number was 35 and this year it is 95. The number of deaths have increased in one year from 8 to 20. That's one death per month on average.
When does this begin to become alarming? If you read my previous posts, you will notice that I usually do give a non-biased accounting of what Biogen is working on in order to reduce the risk of using Tysabri population-wide. Trying to identify who is most at risk.
I gotta tell you. It was the highly-vocal patient activists with superior sleuthing skills who put two-and-two together to notice that many of the earlier cases of PML were in people who had used serious immunosuppressants prior to or in connection with Tysabri.
I would fall into that category of patient since I have used Methotrexate for my RA for almost four years. Now I use Methotrexate and Rituxan, a drug which also carries the PML risk. However, in the RA world, we have had only three cases of PML reported out of 100,000 patients. Only three!! That information is from October 2009.
I mention Rituxan because I have seen Tysabri patients (who rightfully appreciate what this drug does for them) point out other medications which also carry the PML risk. But the ratio of risk does not compare.
Another curious difference in this month's Dow Jones news release is that the detail of location of the PML cases is not enumerated. This had been done each month (except two) since September 2009. Why did they not include the information this month?
My inkling is that several of the 10 new cases came from within the United States. (According to chatter on the cafepharma message board, two of the ten were from the United States, but this cannot be confirmed.) Why do I presume/hypothesize that? Because as recently as December, even a TOUCH nurse described to me that the vast majority of cases were occurring elsewhere. This was true one year ago and had become the PR message which Biogen pushed. It is not true now.
But the US case to EU case ratio of last February, a ratio of 1:2, no longer exists. The ratio reached 1:1.2 last month, a number which would be surprising to most US patients.
Now I fully acknowledge that this post does not present a balanced and unbiased discussion of the issue. I've done that in previous writings. This time I just wanted to get the information out and provide some personal thoughts on the matter.
Below you will find an updated chart reflecting the newly reported cases. If I learn how many were in the US compared to elsewhere, I will add that information.
I've included the February 2011 Dow Jones report below.
Biogen: 10 More Infections, 4 More Deaths In Tysabri Patients
By Thomas Gryta, Of DOW JONES NEWSWIRES
NEW YORK -(Dow Jones)- Biogen Idec Inc. (BIIB) disclosed 10 more cases of a rare brain infection among multiple sclerosis patients taking Tysabri, a medication it sells with Elan Corp. (ELN, ELN.DB), bringing the total number of affected patients to 95 as of Feb. 2.
The Weston, Mass., biotech company reported that four more of those patients have died, bringing the total to 20.
The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.
The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease. Sales rose 16% in 2010 to $1.2 billion and 56,600 patients were on the drug at the end of December.
Regulators have said that they watch the cases of PML, but have concluded that the benefits of the medicine to MS patients outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006 with a strict access plan that monitors patients.
There is hope that the development of a blood test may better determine the chances of patients contracting PML. Although the overall risk of the infection remains small, it can have devastating and permanent effects, so a test may make patients and physicians more comfortable with using the drug. Biogen and Elan have filed with the Food and Drug Administration to update the label of Tysabri to include information about certain antibodies in the blood being a PML risk factor.
The overall global PML rate is now at 1.16 per 1,000 patients. Although that is above the typical one-in-1,000 rate commonly cited from clinical trials of the drug, a Biogen spokeswoman said the current PML figure falls within that seen in the trials' confidence interval, a statistical tool that helps show the precision of a measurement.
The rate is about 1.64 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.41 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year. The rate drops to 1.06 per 1,000 patients for those on the drug between three and four years.
-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com
'They' likely decided that filtering that information through the neurologists (in the TOUCH program) would be wiser, perhaps for them anyways. Fortunately though, a small group of news media outlets are given the reports to release to the public. The Wall Street Journal (owned by Dow Jones & Company) has been dutifully providing us with the monthly updates. A history of the press releases are compiled by the Multiple Sclerosis Resource Centre.
I've written previously about Tysabri and PML, with a lengthier discussion of the topic at HealthCentral. Use the search box located half-way down the sidebar to find older posts as well.
I'm wondering when somebody is going to finally notice that in one year's time, 60 new cases of PML have been reported. 60!! Last February the number was 35 and this year it is 95. The number of deaths have increased in one year from 8 to 20. That's one death per month on average.
When does this begin to become alarming? If you read my previous posts, you will notice that I usually do give a non-biased accounting of what Biogen is working on in order to reduce the risk of using Tysabri population-wide. Trying to identify who is most at risk.
I gotta tell you. It was the highly-vocal patient activists with superior sleuthing skills who put two-and-two together to notice that many of the earlier cases of PML were in people who had used serious immunosuppressants prior to or in connection with Tysabri.
I would fall into that category of patient since I have used Methotrexate for my RA for almost four years. Now I use Methotrexate and Rituxan, a drug which also carries the PML risk. However, in the RA world, we have had only three cases of PML reported out of 100,000 patients. Only three!! That information is from October 2009.
I mention Rituxan because I have seen Tysabri patients (who rightfully appreciate what this drug does for them) point out other medications which also carry the PML risk. But the ratio of risk does not compare.
Another curious difference in this month's Dow Jones news release is that the detail of location of the PML cases is not enumerated. This had been done each month (except two) since September 2009. Why did they not include the information this month?
My inkling is that several of the 10 new cases came from within the United States. (According to chatter on the cafepharma message board, two of the ten were from the United States, but this cannot be confirmed.) Why do I presume/hypothesize that? Because as recently as December, even a TOUCH nurse described to me that the vast majority of cases were occurring elsewhere. This was true one year ago and had become the PR message which Biogen pushed. It is not true now.
But the US case to EU case ratio of last February, a ratio of 1:2, no longer exists. The ratio reached 1:1.2 last month, a number which would be surprising to most US patients.
Now I fully acknowledge that this post does not present a balanced and unbiased discussion of the issue. I've done that in previous writings. This time I just wanted to get the information out and provide some personal thoughts on the matter.
Below you will find an updated chart reflecting the newly reported cases. If I learn how many were in the US compared to elsewhere, I will add that information.
 |
| Cases of PML reported in patients using Tysabri, including deaths and locations. |
Biogen: 10 More Infections, 4 More Deaths In Tysabri Patients
By Thomas Gryta, Of DOW JONES NEWSWIRES
NEW YORK -(Dow Jones)- Biogen Idec Inc. (BIIB) disclosed 10 more cases of a rare brain infection among multiple sclerosis patients taking Tysabri, a medication it sells with Elan Corp. (ELN, ELN.DB), bringing the total number of affected patients to 95 as of Feb. 2.
The Weston, Mass., biotech company reported that four more of those patients have died, bringing the total to 20.
The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.
The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease. Sales rose 16% in 2010 to $1.2 billion and 56,600 patients were on the drug at the end of December.
Regulators have said that they watch the cases of PML, but have concluded that the benefits of the medicine to MS patients outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006 with a strict access plan that monitors patients.
There is hope that the development of a blood test may better determine the chances of patients contracting PML. Although the overall risk of the infection remains small, it can have devastating and permanent effects, so a test may make patients and physicians more comfortable with using the drug. Biogen and Elan have filed with the Food and Drug Administration to update the label of Tysabri to include information about certain antibodies in the blood being a PML risk factor.
The overall global PML rate is now at 1.16 per 1,000 patients. Although that is above the typical one-in-1,000 rate commonly cited from clinical trials of the drug, a Biogen spokeswoman said the current PML figure falls within that seen in the trials' confidence interval, a statistical tool that helps show the precision of a measurement.
The rate is about 1.64 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.41 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year. The rate drops to 1.06 per 1,000 patients for those on the drug between three and four years.
-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com
Thursday, February 17, 2011
Carnival of MS Bloggers #82
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Love, Pride, Brains, Research, and Courage
by Kristie of X-Out MS
Today I had to do something that I never thought I would. I sent my husband (at work) a 4-letter word message. Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word.
What was it?
Help.
That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful. It's literally acknowledging that I can't do it on my own & I need someone else to assist me.
Super frustrating.
Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.
Love.
by Dan Digmann
I realize we aren’t all runners, but hear me out on this.
So the other night I was running on the indoor track at Central Michigan University’s Student Activity Center. It’s where I run in the winter. Not that I mind the cold outside, but it keeps my MS-numbed feet and me from running/slipping/falling on the ice and snow.
Nine laps make a mile. The middle lane of the three-lane track is intended for runners. And this time of year, the SAC track is packed with college coeds eager to sculpt their bodies into spring break shape.
This is my fifth winter running at the SAC, and I had an epiphany the other night when a runner blew past me at lightning-fast speed.
Here's a photo of me running at the SAC that was featured in a Morning Sun article last year.
But this year a kinder, gentler Dan had a more mature thought about this man who sprinted by me as though I was standing still. Rather than hate him, I truly saw myself in him. Because that was me … just two days earlier. I was the one blowing by everyone else.
Two days earlier I was speed training. Sprinting half a lap, jogging for one. Sprinting half a lap, jogging for one. I wasn’t showing off. Not entirely a wannabe. I was running my race. For me.
So many times with MS and life, it’s easy to compare myself to how and what other people are doing. Who would have thought a keeping-up-with-the-Joneses attitude could work its way into living with a chronic illness?
This is where I’m grateful I got into running because the lessons I’ve learned there have helped me to mentally move forward in my life with MS.
When I enter a race, the success of my race is not determined by how I finish overall or within my age group. Rather, how does it compare to my personal best time? My personal best time.
Oh sure, it’s great to place among other competitors. But even then, are we satisfied? One time several years ago I honestly placed first in my age group. Rather than fully celebrate first place, I downplayed it and made excuses (“But there were only two in my age group!”). I imagine I would have been more proud and perhaps even bragged about it had it’d been a personal best.
So I try my best to focus on what I’m doing in running and in life and compare it me. My dreams. My abilities. My circumstances. My goals. My personal best.
And how my personal best compares to everyone else is either excused by my disease – “Yeah, but I have MS” – or an added point of pride – “Yeah! AND I have MS.”
Know yourself, and run your race.
by Diane J Standiford
In my new life at the assisted living/retirement community I had to move to (TWO YEARS AGO! WHERE DID THE TIME GO?), there rages within me the desire to build some new brain cells and paths up there. Many firsts and "never tried before"s have taken place. I hope my brain is growing a bit.When we are babies, EVERY day is packed full of "never tried before"s, then with each passing year we try less and less, just a fact of being human. So, while I know I'll never catch up with that growth during my earliest years, I will do as much as I can.
Never ate peppers before. Never played Bridge. Never met so many people. Never wrote so much. Never read so much. Never typed so much. Never ate oatmeal, grits, Gouda cheese, asparagus, beef jerky, my stomach must be going crazy. Never spoke Swahili. Never learned so much about the Bible or Beverly Hills. (I thought Palm Springs was in Florida--all knowledge from Blogs I've followed.) Never used skin cream. Well, just never have done so many new things since I was a baby. And you know what? I think it is working. My brain says it is having a blast.
"You never___?!!" Yeah, I get that a lot. I'm 53 and doing it now.
Last week I played a great hand of Bridge. Got the cards and played them well. Nine diamonds, partner opened a spade, I countered a diamond, then back with 3NT. (Spade lead might have sunk me.) My dummy had 2 aces and west lead went low right to her! She also had two diamonds. Perfect. Yes, after over a year, I am beginning to be able to play Bridge.
Now, a game like this covers it all---being social with live people (not that any of you are dead, but we don't have to use as much of our brain with facebook friends or when reading a comment/blog, we basically rely on previous brain paths to decide if the words are sarcastic or serious or neither or both) forces the brain to interpret many body gestures and verbal cues. Shuffling the deck of cards (which I could not do at ALL 2 years ago, but now do it with a passing C), dealing them (again, took over a year) and holding 13 cards, all digging those brain paths.
Taking my brain back from multiple sclerosis is my new destiny. I didn't chose MS, but I can chose this. I am putting action behind the words, "Fight MS," because we really are at war here. When I read those who post "Fight MS" (in blogs and Face Book), they too often are charging straight into drugs or surgery, both which have yet to be without a doubt proven to help MS AT ALL! (That's right, I said it, again, some YouTube videos and people in an early stage, RRMS, or complete undocumented by the medical establishment/scientists stories of great turn-arounds, are not cutting it with me, *I* could have made those videos and told of such success myself after my diagnosis in 1990---and the only culprit was the natural and proven course of MS doing its thing, being healed by my own body in ways no, NO, medical researcher knows.)
"Pass." "One club." "One spade." "Pass." "Two no trump."
Taking back my brain one card at a time.
by Judy of Peace Be With You
Share the urgency.
That should be the call to arms
of all MSers.
What is evident:
time is not on our side.
Quite the opposite.
Running on ice floats.
Current research feels that way.
We need a cure now!
That should be the call to arms
of all MSers.
What is evident:
time is not on our side.
Quite the opposite.
Running on ice floats.
Current research feels that way.
We need a cure now!
The following video was sent to me by one of the persons who worked on this mini-documentary. It is presented by BYUtv.
Courage: Ryan Ren
Finally, I want to congratulate Marc Stecker, the Wheelchair Kamikaze, for being named the Best Patient Blog of 2010. Way to go, my friend!!
This concludes the 82nd edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on March 3, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 1, 2011.
Thank you.
Thank you.
Comments for this post.
Wednesday, February 16, 2011
Tuesday, February 15, 2011
Welcome MS Bloggers
Please welcome the following bloggers to the MS blogging community. If you have a blog and would like it listed on the big blog page, please let me know.
Lee-Anne - Lumpy Custard
Kate - The Tales of Me
Crystal - Fighting MS 1 Day At a Time
Amanda - My MS Blog
Funky Mango - Funky Mango's Musings
Emms - Recipes for Lemonade
Maryann - MS and ME
Andrew - Everyday Battles
Nicole - My New Normals
NRN2B - MyelinMalarkey
vincetucker's posterous
Lee-Anne - Lumpy Custard
Kate - The Tales of Me
Crystal - Fighting MS 1 Day At a Time
Amanda - My MS Blog
Funky Mango - Funky Mango's Musings
Emms - Recipes for Lemonade
Maryann - MS and ME
Andrew - Everyday Battles
Nicole - My New Normals
NRN2B - MyelinMalarkey
vincetucker's posterous
Monday, February 14, 2011
Valentine's Smiles
Just want to wish everybody a nice day. It is 66 degrees currently in Northern Virginia and the cats are getting ready for spring. They are itchy and shedding!!
Musette is in her favorite chair taking a tremendous yawn. This was after she had me scratch her entire body vigorously for several minutes, leaving a glove of fur on my hand.
A few nights ago, the boys (aka Pippin and Oscar) were sharing the coat. This was a rare moment where they were practically curled up together. I'm so glad that they are friends. It's good for everybody.
On Friday, my sweetie surprised me with red roses and a huge balloon. This helium/mylar balloon is going to last FOREVER. My mother surprised me with one for my birthday at the beginning of September. It is still floating, thinner certainly but still strongly up in the air. This new balloon will be a good reminder that I am loved.
Here are a few of the beautiful roses Rob presented. Their smell is rather pleasant and Pippin (the black cat who is difficult to see in the photo above) loves to get his nose right in the middle of the blooms. Pippin appreciates the finer things in life....Pounce treats, dry cat food, and fragrant blooms and foliage.
Note: How does this post relate to living with MS and RA? It doesn't.
Musette is in her favorite chair taking a tremendous yawn. This was after she had me scratch her entire body vigorously for several minutes, leaving a glove of fur on my hand.
A few nights ago, the boys (aka Pippin and Oscar) were sharing the coat. This was a rare moment where they were practically curled up together. I'm so glad that they are friends. It's good for everybody.
On Friday, my sweetie surprised me with red roses and a huge balloon. This helium/mylar balloon is going to last FOREVER. My mother surprised me with one for my birthday at the beginning of September. It is still floating, thinner certainly but still strongly up in the air. This new balloon will be a good reminder that I am loved.
Here are a few of the beautiful roses Rob presented. Their smell is rather pleasant and Pippin (the black cat who is difficult to see in the photo above) loves to get his nose right in the middle of the blooms. Pippin appreciates the finer things in life....Pounce treats, dry cat food, and fragrant blooms and foliage.
Happy Valentine's Day!!
Note: How does this post relate to living with MS and RA? It doesn't.
One-on-One is How My World Turns
Last fall I attended and spoke at several conferences, individually and on panels. It was an honor to be a guest at these events. The primary reason I was invited to each event was based upon my writings online.
If you are reading this then you know that I spread my words and efforts over many different venues. 'Brass and Ivory' is my home online but I spend much more time collectively at the other websites where I contribute.
These websites include:
Probably due to the diversity of this collection of friends, I share less of myself rather than more on Facebook. Here on the blog, I share almost as much as I might with my closest 'in real life' friends. But to be honest, there is much that I hold back. I'm sure everybody does somewhat.
Back to the catalyst for this particular post. At each of the conferences where I spoke in the months of September, October, November, and December, I was asked several questions centered around a singular theme - How influential are you?
"Do you know what your readership is? What is your reach? Do you know how many people visit your blog every day? How many Twitter followers do you have? What are your blog's traffic stats?"
I don't have good answers to any of those questions except maybe the Twitter follower question. But how many of those people have since abandoned Twitter for other online social venues? The number shown does not represent much of anything.
It is even more impossible to know exactly who is reading this blog or who might see any particular tweet I've posted. For the blog, I do not require that anybody come here to read. You can stay offsite in the comfort of a Google Reader or the equivalent.
I can see that there are 127 people who have "joined" this blog, 376 people who are subscribed through Feedburner, and an unknown number who follow this blog through Networkedblogs on Facebook. Then there are the 107 who follow the Carnival. That's well over 600 people, right? Maybe, maybe not.
To be honest, it doesn't matter to me how many people read this blog. It matters to me that those who do read it find something which helps them. This blog isn't designed to gain a cult following. It is aimed at the individual.
One by one I have gotten to know people and develop personal relationships. That's also what I do in my music teaching...one-on-one attention and development. It works best for me and for those around me. In fact, I have some students for whom this is their 11th year of lessons with me. Just think about that - 11 years out of someone's life who is only 15, 17, or 18. Now that is influential!!
But those in the business of healthcare and social media (ie. the marketing folks who are trying to figure out how to "connect" with all of us patients) want to know the numbers. It is the mentality that tossing out a message over a bunch of people might result in it sticking to a few is successful. That's how those commercials or magazine ads work - mass media marketing.
I learned this week that throwing out many messages (even if they are individually sent) does not always result in people taking action upon the message or request. It was only those with whom I had already had direct connect previously who took action (and then sent a kind word of support).
It doesn't matter that I theoretically have more than 2911 people who read what I have to say. (Yes, I know that many individuals may be duplicated in the numbers from site to site but stick with me here.) There are less than one 10th of that who visit the blog daily. Again, no one HAS TO come to the blog to read ever. (I'm toying with the idea of changing that as an experiment.)
OK, now I've digressed. What was I saying?
It is on the individual level where my influence matters. I have no cult following or popularity. I can't make people take action upon my say so.
My blog was just in a competition where I asked for votes and support. The individual one-on-one response was amazing. My blog received 592 individual votes. I told everybody only one vote allowed per computer or IP address, so that's what people did.
I learned this weekend that many of those who voted for my competitor were able to vote multiple times. How the system allowed their computers to do so, I don't really know. His blog received 864 votes.
Unfortunately, our blogs are read by some of the same people. Those people had to make a choice for whom to vote. With that in mind, it is amazing that we collectively received 1456 votes which amounted to 88.4% of the total votes in our category. Only one other category in the competition received more responses than the "Best Patient Blog" category did. For a medical blog competition, that is amazing.
Brass and Ivory may have fallen 273 votes short of winning, but I thank the individuals who took the time to follow through on my request to vote. Your support is much appreciated. I would have liked to have won. This blog deserves it and I know that many, many individuals would have awarded it to me if they could. Over 500 individuals showed that type of support.
Thank you very much for your support. It is the positive response I receive from individuals which keeps me motivated. Without motivation, I would say to hell with this blogging business. But then again, the paid writing I do elsewhere online did manage to fund my IRA this year and pay my taxes, both which are very important to this self-employed freelance person living with chronic disease.
Finally, thank you for allowing me to contemplate the concept of "influence" and to indulge in a pseudo-rant. I sincerely do appreciate your readership and support. Please let me know you were here by leaving a comment.
Thanks!!
If you are reading this then you know that I spread my words and efforts over many different venues. 'Brass and Ivory' is my home online but I spend much more time collectively at the other websites where I contribute.
These websites include:
- and maintaining the MS Blogger List
- @LisaEmrich
- @MS_Bloggers
- @MSHealthCentral
Probably due to the diversity of this collection of friends, I share less of myself rather than more on Facebook. Here on the blog, I share almost as much as I might with my closest 'in real life' friends. But to be honest, there is much that I hold back. I'm sure everybody does somewhat.
Back to the catalyst for this particular post. At each of the conferences where I spoke in the months of September, October, November, and December, I was asked several questions centered around a singular theme - How influential are you?
"Do you know what your readership is? What is your reach? Do you know how many people visit your blog every day? How many Twitter followers do you have? What are your blog's traffic stats?"
I don't have good answers to any of those questions except maybe the Twitter follower question. But how many of those people have since abandoned Twitter for other online social venues? The number shown does not represent much of anything.
It is even more impossible to know exactly who is reading this blog or who might see any particular tweet I've posted. For the blog, I do not require that anybody come here to read. You can stay offsite in the comfort of a Google Reader or the equivalent.
I can see that there are 127 people who have "joined" this blog, 376 people who are subscribed through Feedburner, and an unknown number who follow this blog through Networkedblogs on Facebook. Then there are the 107 who follow the Carnival. That's well over 600 people, right? Maybe, maybe not.
To be honest, it doesn't matter to me how many people read this blog. It matters to me that those who do read it find something which helps them. This blog isn't designed to gain a cult following. It is aimed at the individual.
One by one I have gotten to know people and develop personal relationships. That's also what I do in my music teaching...one-on-one attention and development. It works best for me and for those around me. In fact, I have some students for whom this is their 11th year of lessons with me. Just think about that - 11 years out of someone's life who is only 15, 17, or 18. Now that is influential!!
But those in the business of healthcare and social media (ie. the marketing folks who are trying to figure out how to "connect" with all of us patients) want to know the numbers. It is the mentality that tossing out a message over a bunch of people might result in it sticking to a few is successful. That's how those commercials or magazine ads work - mass media marketing.
I learned this week that throwing out many messages (even if they are individually sent) does not always result in people taking action upon the message or request. It was only those with whom I had already had direct connect previously who took action (and then sent a kind word of support).
It doesn't matter that I theoretically have more than 2911 people who read what I have to say. (Yes, I know that many individuals may be duplicated in the numbers from site to site but stick with me here.) There are less than one 10th of that who visit the blog daily. Again, no one HAS TO come to the blog to read ever. (I'm toying with the idea of changing that as an experiment.)
OK, now I've digressed. What was I saying?
It is on the individual level where my influence matters. I have no cult following or popularity. I can't make people take action upon my say so.
My blog was just in a competition where I asked for votes and support. The individual one-on-one response was amazing. My blog received 592 individual votes. I told everybody only one vote allowed per computer or IP address, so that's what people did.
I learned this weekend that many of those who voted for my competitor were able to vote multiple times. How the system allowed their computers to do so, I don't really know. His blog received 864 votes.
Unfortunately, our blogs are read by some of the same people. Those people had to make a choice for whom to vote. With that in mind, it is amazing that we collectively received 1456 votes which amounted to 88.4% of the total votes in our category. Only one other category in the competition received more responses than the "Best Patient Blog" category did. For a medical blog competition, that is amazing.
Brass and Ivory may have fallen 273 votes short of winning, but I thank the individuals who took the time to follow through on my request to vote. Your support is much appreciated. I would have liked to have won. This blog deserves it and I know that many, many individuals would have awarded it to me if they could. Over 500 individuals showed that type of support.
Thank you very much for your support. It is the positive response I receive from individuals which keeps me motivated. Without motivation, I would say to hell with this blogging business. But then again, the paid writing I do elsewhere online did manage to fund my IRA this year and pay my taxes, both which are very important to this self-employed freelance person living with chronic disease.
Finally, thank you for allowing me to contemplate the concept of "influence" and to indulge in a pseudo-rant. I sincerely do appreciate your readership and support. Please let me know you were here by leaving a comment.
Thanks!!
Saturday, February 12, 2011
Emotionally Fuzzy Face
In the past week, someone asked me - "What symptoms do you know will trigger a relapse?" This person does not have MS but was trying to figure out how someone with MS might handle their disease. I explained that this isn't exactly the way it works...well for me anyways.
Symptoms do not cause or trigger a relapse. A relapse may cause and trigger new or increased symptoms. This has been my experience and it fits the accepted 'definition' of an exacerbation or relapse.
However, there are a select collection of symptoms which seem to precede a relapse in my case. Not always, but often I will notice that I begin to experience INCREASED sensory symptoms.
I say increased (capitalized) because I live with sensory issues every single day. I joke that I always dare the neuro to make me flinch or make me say 'ouch' when he/she uses the safety pin to prick my legs and arms (even my back). The neuro nurse insists that she doesn't want to draw blood, but I say go for it. Make me feel something.
One particularly annoying sensory symptom which has become a barometer of how my body is dealing with stress is plastered across my face. This symptom literally spreads across my cheeks, nose, eyebrows, and forehead.
It is my FUZZY FACE.
I remember when a random floating cat hair would drive me crazy when it hit my face. That cat hair was so difficult to grab hold of and remove. My fuzzy face feels more like soft, fluffy cotton has permanently landed on my cheeks. No amount of brushing it away will make it go away.
When I am stressed, my fuzzy face shows up. When I have been an insomniac for too many days, my fuzzy face shows up. When I am emotionally drained, my fuzzy face shows up.
The past two weeks have found me emotionally drained, an insomniac, and a tad bit stressed. My face started feeling fuzzy about three days ago. I need to breathe and let it go.
I feel that I'm crushing under the pressure of keeping up with things. I have an article re: joint surgery which was due earlier this past week. I spent much of last weekend lamenting just how I didn't feel like reading any more info about joint replacement materials or techniques, no more about scientific studies on replacing toe joints, and definitely no more about common hip or knee replacement surgeries.
No more, please. No more images of fingers sliced open during surgery. No more attempting to pick the relevant information and compile it into a neat-and-tidy 800 word essay. Simply no more.
Sometimes I get tired of seemingly giving and giving. Today some friends gave me great words of support when I expressed a little exasperation. They confirmed that I'm not being selfish to want to benefit from my own efforts on occasion. I really needed to read those words.
So after a big cathartic (internal) scream, I hope that tomorrow I will wake up and have a normal-feeling face. If so, then I will know that emotional stress has been the cause.
My emotionally fuzzy face - always a good sign to back off and try to relax. So unlike an ostrich, I will 'face' this one head on. I owe it to myself.
Symptoms do not cause or trigger a relapse. A relapse may cause and trigger new or increased symptoms. This has been my experience and it fits the accepted 'definition' of an exacerbation or relapse.
However, there are a select collection of symptoms which seem to precede a relapse in my case. Not always, but often I will notice that I begin to experience INCREASED sensory symptoms.
I say increased (capitalized) because I live with sensory issues every single day. I joke that I always dare the neuro to make me flinch or make me say 'ouch' when he/she uses the safety pin to prick my legs and arms (even my back). The neuro nurse insists that she doesn't want to draw blood, but I say go for it. Make me feel something.
It is my FUZZY FACE.
I remember when a random floating cat hair would drive me crazy when it hit my face. That cat hair was so difficult to grab hold of and remove. My fuzzy face feels more like soft, fluffy cotton has permanently landed on my cheeks. No amount of brushing it away will make it go away.
When I am stressed, my fuzzy face shows up. When I have been an insomniac for too many days, my fuzzy face shows up. When I am emotionally drained, my fuzzy face shows up.
The past two weeks have found me emotionally drained, an insomniac, and a tad bit stressed. My face started feeling fuzzy about three days ago. I need to breathe and let it go.
I feel that I'm crushing under the pressure of keeping up with things. I have an article re: joint surgery which was due earlier this past week. I spent much of last weekend lamenting just how I didn't feel like reading any more info about joint replacement materials or techniques, no more about scientific studies on replacing toe joints, and definitely no more about common hip or knee replacement surgeries.
No more, please. No more images of fingers sliced open during surgery. No more attempting to pick the relevant information and compile it into a neat-and-tidy 800 word essay. Simply no more.
Sometimes I get tired of seemingly giving and giving. Today some friends gave me great words of support when I expressed a little exasperation. They confirmed that I'm not being selfish to want to benefit from my own efforts on occasion. I really needed to read those words.
So after a big cathartic (internal) scream, I hope that tomorrow I will wake up and have a normal-feeling face. If so, then I will know that emotional stress has been the cause.
My emotionally fuzzy face - always a good sign to back off and try to relax. So unlike an ostrich, I will 'face' this one head on. I owe it to myself.
Wednesday, February 9, 2011
Tick-Tock, Tick-Tock
My students don't much like the metronome either. LOL.
(Note: These are not my kitties. But they are cute anyways.)
(Note: These are not my kitties. But they are cute anyways.)
Tuesday, February 8, 2011
New Members of the Online MS Community
Please welcome these new MS Bloggers and MS Websites to the Community.
Lauren - Living and writing in a world of disAbility and challenges
Matt - Multiple Sclerosis Daily News
Kaz - Positive About MS
Kelley - Lifting My Spoon
Ms Andisue - MS, Music and Me
Laurie - Living, Loving, and Laughing with Multiple Sclerosis
Nancy - Dancing with Dachshunds and the Art of Living with Intention
Mary - It is what it is, until it isn't what it once was
Jamie - MS Mates
Simeon - But You Look So Well
Tammy - My Life with Multiple Sclerosis
Lori - Too Late to Save the Brain
Megan - It's not Megan, It's Megan
Sarah - The Sheer Truth
Linda - Thy Grace is Sufficient
Emme - Moms Vs. MS
Linda - Multiple Sclerosis Relief
Lauren - Living and writing in a world of disAbility and challenges
Matt - Multiple Sclerosis Daily News
Kaz - Positive About MS
Kelley - Lifting My Spoon
Ms Andisue - MS, Music and Me
Laurie - Living, Loving, and Laughing with Multiple Sclerosis
Nancy - Dancing with Dachshunds and the Art of Living with Intention
Mary - It is what it is, until it isn't what it once was
Jamie - MS Mates
Simeon - But You Look So Well
Tammy - My Life with Multiple Sclerosis
Lori - Too Late to Save the Brain
Megan - It's not Megan, It's Megan
Sarah - The Sheer Truth
Linda - Thy Grace is Sufficient
Emme - Moms Vs. MS
Linda - Multiple Sclerosis Relief
Monday, February 7, 2011
Dissonance and Harmony - Working Together
Wonderful Dueling Cellos!!
I needed to see/hear something like this today. It speaks to me on so many levels too complicated to explain.
Rather than competing, these two artists are working in beautiful harmony. Listen to this arrangement of Prelude by Dmitri Shostakovitch. So soothing.
Don't forget to vote for 'Brass and Ivory' for Best Patient Blog -
http://www.medgadget.com/2010bestpatient.html
I needed to see/hear something like this today. It speaks to me on so many levels too complicated to explain.
Rather than competing, these two artists are working in beautiful harmony. Listen to this arrangement of Prelude by Dmitri Shostakovitch. So soothing.
Don't forget to vote for 'Brass and Ivory' for Best Patient Blog -
http://www.medgadget.com/2010bestpatient.html
Saturday, February 5, 2011
Vote for 'Brass and Ivory' as Best Patient Blog
The polls are now open in the Seventh Annual Medical Weblog Awards Sponsored by Epocrates and Lenovo! This is the fourth year that Brass and Ivory has been nominated for Best Patient Blog and the third year that Brass and Ivory has been named a finalist.
It would be wonderful if this were the first year that Brass and Ivory WON!! Please go to Medgadget and place your vote. Or go directly to the Best Patient Blog voting poll to place your vote. Only one vote per IP address or smart phone. Yes, you can vote with your mobile device. THANK YOU!!
Thursday, February 3, 2011
Carnival of MS Bloggers #81
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
New Year, New Beginnings, and Brain Games
This is the Year of the Rabbit. Happy New Year!
from Matt of Multiple Sclerosis Daily News
I feel like for the last week I've been waking up from my diagnosis. It's kind of like waking up with a hangover and asking, "Now what did I do for the last six months?"
I think the biggest thing for me is realizing my mortality. There's going to be an end to things. The thing is, it's sort of a blessing. Knowing there's going to be an end but also having it be in the future gives us time to appreciate our experiences. I really do appreciate life so much more now.
I'm oddly less disturbed by my fading abilities now. Maybe because I've been able to read so many other people's stories. When I read a story about someone only being able to walk to the mailbox after 15 years I think, "Oh, you can still walk to the mailbox? Awesome!"
The other day I was at a meeting where a person with advanced MS rolled over to a counter and then stood up to get something. I thought to myself, "Oh, you can still stand? Awesome!"
I thought that being handicapped was going to be so much worse than that. I know that for some people it is, but even they seem relatively happy day to day. They still have passions and thoughts, they're literally still alive.
I don't know what I was thinking was going to happen. I mean, when I could barely put my socks on, that was scary. But really, potential sock problems are pretty easy to deal with compared to even current problems I have.
I don't know. I'm not saying it's great, but it just doesn't seem so scary anymore. It's a hard road, but at least it's a road.
from Dave at My life with Multiple Sclerosis
Well I met with my neuro yesterday and got some blood tests back. Sticking with the plan and getting visits to everyone prior to treatment!!!! I want base line with everyone.
I am not sure why but today a light bulb went off in my head. A few of you probably already had these thoughts. Neuros treating MS patients are really only a monitoring station/service. They can prescribe the "drugs", the pain pills, the depression pills, sleep aids, etc. etc and after that…there really is nothing. They can do more tests. They can see if things have changed. They can poke and prod you. Then, frankly after that there is absolutely nothing they can do…..They can say, “Keep your chin up, buckaroo” or “Let’s try a new drug” (if you take them)…..but in the end….there you are…nothing…..ZIP.
Off my soap box and back to my appointment. Overall it went very well. My blood tests were great except my B12 1900 is in the stratosphere. After that I listened to the "drugs" talk again. The "drug" conversation, which in no way was over bearing or anything, went pretty smooth and we moved on. Reviewed my changes in symptoms, talked about sleep apnea (creeping into my life), and of course had what I will call a weak neuro exam. As an example and I will leave this alone I didn't have to walk, take an eye test, or take my shoes off. Then the 800 pound gorilla came in the room.. I asked about his thoughts on CCSVI and guess what. What is that….:(? We then discussed it for a bit. We discussed the trials going on. He asked if I had tried getting into them. Of course I replied yes in fact I have and was denied. Then the next bomb..tic..toc… I am going for the treatment on the 11th!
To me and my wife's surprise this is where things took a great turn. My neuro said 3 HUGE things to us. One, I am not against learning from my patients, two if the interventional radiologist in NY needs any test done please let me know and three he would talk with some local IRs about CCSVI and see what they may or may not be doing. KUDOS! Then there was me and he wanted to be in the loop on what happens. I got his email address and will be forwarding him some information on CCSVI some testimonials and my information so far. This part could not have gone better for us.
So to close this out it was a worthwhile trip to the neuro. I now have a neurological resource willing to learn and grow along with me as I go on with my MS. Good stuff.
9 days……
from CCSVI {M}ammanannys{S}tory
I often said only half jokingly that of all the things MS had taken for me, I missed my mind most. I couldn’t remember where I put things, important dates or even what day of the week it was sometimes. Thoughts I wanted to express were not the words that came out of my mouth. During remissions, I did not get total relief from these problems. When I progressed to SPMS, I was afraid I might really lose my mind. I taught adult classes until my ability to concentrate was severely compromised. My neurologist ordered cognition therapy for me when I couldn’t repeat simple sentences word for word. I had to use materials that were more suited to an elementary student than a 50 something well educated woman. I was determined to do all I could to exercise my brain until somewhere, somehow, I could break through the cog fog that made me ashamed to be around my own family. I had a great deal of difficulty keyboarding but I knew there were free resources available online and I used them to get me through the last few years. If the angioplasty procedure did nothing else but improve my cognition, I would have been ever so grateful.
Many people with this condition have cognitive problems. It’s important to do whatever you can to stay sharp while you for your procedure. I have listed a few websites with free games and resources to help you. You might even enjoy playing some of them with your children, grandchildren or friends.
Some people are telling us that we cannot repair the damage already done to our brains. I agonized over that possibility before I had the procedure. Thankfully in this regard the naysayers are wrong. This is just another piece of the CCSVI puzzle where we can take control of our bodies and minds.
There are many resources other than these and I’m not advertising for anyone. These should all be free although some may have “upgrades” to pay for if you want all the bells and whistles, but they aren’t necessary at all.
www.lumosity.com
Lumosity trains your brain with 30 targeted brain games and exercises. The specialized brain training web application comes in both free and paid subscription versions. The library of games relate to speed, memory, attention, flexibility, and problem solving. The full suite of games is open to subscribers only, though those with a free account can play quite a few games across the board.
The games are well designed: the Birdwatching game works on your visual processing skills and concentration. Lumosity also has multiple courses designed by experts that bolster weak areas like weak memory, problem solving, math skills, and also brain related medical conditions like ADHD and TBI. Don’t forget to take their free Brain Grade test.
www.sharpbrains.com
Sharp Brains is actually a blog that keeps tabs on the brain fitness and cognitive health industry. So expect to find a lot of articles on brain health and the use of digital tools to enhance our mental muscles. The site also tries to raise social awareness on the importance of regularly exercising our mental faculties. One way is through the site’s newsletter. But if you are itching to put your brain through the paces head straight to the Teasers section. The large lineup of links to brain games, puzzles, and illusions could keep you occupied for some time.
www.braingle.com
Braingle is a community driven website that says it has the largest collection of brain teasers, riddles, logic problems, quizzes and mind puzzles on the web. 20,000 of them is a large number. Being a part of the community helps as enthusiastic members constantly keep the site updated with the freshest picks of games. As a free member, you can also subscribe to the daily teaser. Check out the Mentalrobics section for some cool brain workouts and articles on topics like stress management and memory.
www.smart-kit.com
At Smart-Kit, you get to cross train your brain on a variety of puzzles and games. All games are meant to be kid safe and designed to stimulate free thinking and problem solving. Some games like the Memory Match Game are easy while you might have to scratch your head when it comes to playing Take Something Literally. The Lateral Thinking games (which comes under the category marked – More) deserve a special mention here.
www.braintraining101.com
Games by their very nature call for a lot of co-ordination and mental skills. Take a game like Tetris or the classic Simon Says and you can ‘reverse engineer’ it as a game for brain exercise.
This concludes the 81st edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on February 17, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 15, 2011.
Thank you.
Thank you.
Comments for this post.
Wednesday, February 2, 2011
Copying with MS Pain
Multiple sclerosis is not a painful disease, right? Wrong. The pain associated with MS can vary from an occasional annoyance to a constant, excruciating distraction.
For years, it was believed that MS was a painless disease. However a systemic review of the literature discussing pain in MS revealed that almost 50% of people living with MS report having pain. Of those reporting pain, 75% of patients had experienced pain within the month prior to the assessment or survey.
If my experience had been included in one of the surveys, I would have been included in the 75% reporting recent pain. The type of pain I have is called neuropathic pain which is caused by nerve damage in the brain and/or spinal cord. When the myelin (insulation for the nerve fibers) becomes damaged, the nerve signals can become distorted and ‘short circuit.’ The result is unpredictable and often painful.
My neuropathic pain began with a case of shingles which emerged shortly after my first round of solumedrol in 2005. Shingles took over the left side of my face and left me with what is called post-herpetic neuralgia (PHN). However, PHN is supposed to eventually fade away. Mine never did.
Read this post in its entirety:
Coping with the Fluctuating Face of Pain when Living with MS
For years, it was believed that MS was a painless disease. However a systemic review of the literature discussing pain in MS revealed that almost 50% of people living with MS report having pain. Of those reporting pain, 75% of patients had experienced pain within the month prior to the assessment or survey.
If my experience had been included in one of the surveys, I would have been included in the 75% reporting recent pain. The type of pain I have is called neuropathic pain which is caused by nerve damage in the brain and/or spinal cord. When the myelin (insulation for the nerve fibers) becomes damaged, the nerve signals can become distorted and ‘short circuit.’ The result is unpredictable and often painful.
My neuropathic pain began with a case of shingles which emerged shortly after my first round of solumedrol in 2005. Shingles took over the left side of my face and left me with what is called post-herpetic neuralgia (PHN). However, PHN is supposed to eventually fade away. Mine never did.
Read this post in its entirety:
Coping with the Fluctuating Face of Pain when Living with MS
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