caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Thursday, May 31, 2007
 
2nd Screening appointment tomorrow
2007-05-31 16:01:46

Earlier this week I did an eye appointment to complete more of these screening requirements for the trial. The eye exam was pretty boring really. My eyes are fine. What's not fine are those damn dialating drops! Jeesh! I *hate* them! They always say that they only last an hour, but for me they always last about 4 hours! My eyes are normally sensitive to light so getting those drops on a sunny day is just cruelty. Tomorrow, I'm back at UBC for the final baseline blood work, cognitive tests again and a quality of life document I think. And then, providing it all goes well, my first dose of Fingolimod (or placebo!) is on Monday! I'll be hospitalized for the day under watch when they give me that first dose. At some point during that time I'll also be trained on giving myself the Avonex (or placebo!) injection. So, that will be the biggest test for me. I haven't fainted yet doing the blood work and I don't intend to faint doing the injection either! We'll see if I can control that part of my faulty brain that goes into faint mode. I've been doing some visualization work to get used to seeing myself give the injection. Not sure if that will have helped me!


Wednesday, May 30, 2007
 
Fampridine-SR - Special Protocal Assesment with FDA
2007-05-30 14:08:46

The objective of the study is to show that individuals treated with Fampridine-SR are significantly more likely to have consistent improvements in their walking than those treated with placebo. Pending clinical results, the FDA has agreed that this trial, MS-F204, together with the company's first Phase 3 trial, MS-F203, would be adequate to support a New Drug Application (NDA) for Fampridine-SR. "We are pleased to have reached this agreement with the FDA, and are already working closely with our team of 35 MS centers to begin the study," said Ron Cohen, M.D., President and CEO. "Currently, there are no approved therapies that improve mobility in people with MS and physicians and patients regularly rate walking as one of the areas of greatest unmet medical need for this condition."


Tuesday, May 29, 2007
 
A trial question
2007-05-29 20:49:08

Stavros left this question for me so i thought I would answer it here: Is the trial you are participating in a double-blind trial? If so, how are you preparing yourself for the possibility of receiving a placebo? Yes, it's a double blind, randomized, 12 month study to test Fingolimods safety and efficacy against Avonex. It has 3 treatment groups. I will be randomly put in one of these three and take this regiment:

1. 1.25mg of Fingolimod (one pill once a day) and placebo IM injection (once a week)

2. 0.5mg of Fingolimod (one pill once a day) and placebo IM injection (once a week)

3. Avonex IM injection (once a week) and placebo pill (one pill once a day)

It says that I will have an equal chance of being assigned to one of the 3 different groups. So, there isn't going to be a "group" that I'll be on nothing! And thats what tipped me over into doing this trial. If I was going to pick an ABCR I would have choosen Avonex anyhow, but with the trial making it free to me and then also the potential of being on Fingolimod to boot, it's a pretty win, win situation for me. I'm also not going to waste a year or 2 not taking anything for my MS which was also important for exactly what you are asking. How would I feel if I was taking nothing for the whole time? Well, I don't have to do it that way, I just won't know if I'll be on the tried and true Avonex at 33% efficacy or on Fingolimod with early phase 2 results showing almost double that efficacy. Hope that answers your questions :) Thanks for asking! Keep the question coming!


Thursday, May 24, 2007
 
Fingolimod as I understand it
2007-05-24 09:15:18

Jim posted a comment with these questions: This does, indeed, show promise. It will be interesting to follow the progress of this medication/ Is the med received by infusion, injecion, or by mouth? Have you any indication as to how it modulates MS? Or is it too early to tell? So, I'll answer then from my uneducated perspective of what I understand at this point: This is a pill taken once a day. Apparantly it's small, but I haven't seen it yet :) They way it was described to me by the clinical trial nurse is that the medication attaches to my t-cells, and then instead of letting them go to myelin for an attack, the medication makes the t-cells migrate back to my lymphnodes so they can be cleaned up and then sent out to battle properly. It's kind of like an interuption in the faulty T-cell activity to slow that contuinued attack on our Myelin. Thats all I know for the moment! I'm back at the hospital on Monday for my second screening appointment and if all continues well in those tests again, I get my first dose of meds on June 4th!


Tuesday, May 22, 2007
 
Cyclophilin D for SPMS
2007-05-22 10:04:56

Interesting bad protein being researched over in Oregon and Italy and they're finding some good stuff. "Cyclophin D is a key regulator of molecular processes in the nerve cell's powerhouse, the mitochondrion, and can participate in nerve fiber death. Inactivating cyclophilin D strengthens the mitochondrion, helping to protect nerve fibers from injury. The findings are published in Proceedings of the National Academy of Sciences. "We're extremely excited," said Michael Forte, Ph.D., senior scientist at the Vollum Institute at OHSU and the study's lead author. "While we can't genetically inactivate cyclophilin D in people, there are drugs out there that can block the protein. Our research predicts that drugs that block cyclophilin D should protect nerve fibers from damage in MS."

MS: The Women's disease?
2007-05-22 10:30:40

New research is showing that the amount of women to men ratio with MS is tipping further for women. Ugh! Come on! Let's keep the men in this club! ;) Okay, okay, let's just all leave the club, but seeing thats not an option, one can only hope...

The study, which will be presented at the American Academy of Neurology's 59th Annual Meeting in Boston, April 28 ,May 5, 2007, demonstrates that the two to one ratio of women to men with MS in the United States in 1940 has grown to approximately four to one in 2000. 'That's an increase in the ratio of women to men of nearly 50 percent per decade,'said study author Gary Cutter, PhD, of the University of Alabama at Birmingham School of Public Health.'We don't yet know why more women are developing MS than men, and more research is needed'

Cutter said researchers will need to discover multiple changes that have cropped up for women over the last several decades, together with the use of oral contraceptives, earlier menstruation, obesity rates, changes in smoking rates, and later age of first births.'We also need to ask the general questions about what women do differently than men, such as use of hair dye and use of cosmetics that may block vitamin D absorption,'he said. 'At this point we're just speculating on avenues of research that could be pursued.

Less Sun = Less Vitamin D = More Disability in MS'ers
2007-05-22 11:43:34

Well, well... finally some results on Vitamin D coming from Australia. "CONCLUSION : The strong associations between disability, sun exposure and vitamin D status indicate that reduced exposure to the sun, related to higher disability, may contribute to the high prevalence of vitamin D insufficiency found in this population-based MS case sample. Active detection of vitamin D insufficiency among people with MS and intervention to restore vitamin D status to adequate levels should be considered as part of the clinical management of MS." So, my questions are: How does one get tested for vitamin D levels? And how much Vitamin D should be taken? Anyone?

Transcutaneous Electrical Nerve Stimulation (TENS) on spasticity in MS
2007-05-22 11:47:18

Anyone using one of these little machines to help their pain levels? Research shows it's a valid treatment. "The aim of this study was to evaluate the effectiveness of TENS on spasticity in MS and, furthermore, to compare two different application times. Thirty-two subjects were randomized into two groups, and a single, blind, crossover design was used to compare two weeks of 60 minutes and 8 hours daily of TENS applications (100 Hz and 0.125 ms pulse width). Outcomes were examined using the Global Spasticity Score (GSS), the Penn Spasm Score (PSS), and a visual analogue scale (VAS) for pain. The results of the study demonstrated that there were no statistically significant differences in the GSS following either 60 minutes or 8 hours daily of TENS (P=0.433 and 0.217, respectively). The 8-hour application time led to a significant reduction in muscle spasm (P=0.038) and pain (P = 0.008). Thus, this study suggests that, whilst TENS does not appear to be effective in reducing spasticity, longer applications may be useful in treating MS patients with pain and muscle spasm."

Shnazzy new Ultra-high-field (7T) MRI coming out
2007-05-22 11:55:48

This new machine can scan better than ever and get people diagnosed earlier in their life with the disease. Bonus for early treatment. I would not have wanted to be diagnosed any earlier in my life than I was. I was more mentally and emotionally prepared for it at age 27 than I would have been at 24 when I had my first real attack that went undiagnosed. However, I wonder where I would be today if I had started preentative therapy back then? Hmmm... "For the study, the researchers analyzed post-mortem brain slices from a multiple sclerosis patient using both 3T and 7T MRI. 7T MRI made it possible to detect numerous multiple sclerosis lesions that were not detectable at 3T MRI, said Steffen Sammet, MD, PhD, lead author of the study. "Multiple sclerosis is difficult to diagnose in its early stages," said Dr. Sammet. The greater sensitivity of 7T MRI for multiple sclerosis can delay disease conversion, and may lead to improved monitoring of neurological deficits in multiple sclerosis. MRI at 7T can give additional information about the lesion microstructure to help us better understand the disease," said Dr. Sammet. "Ultra-high field strength has been an experimental methodology evolving over the last decade. In recent years, and especially as part of the OSU-based effort of the Wright Center of Innovation, we have been pushing, to evolve ultra-high field into a clinically capable imaging method. The significant advantage of higher field strength is the gain in signal that can be used in many different ways to increase sensitivity and increase the speed of acquisition or to increase resolution," said Dr. Sammet."

I might get a better brain? Yay! :)
2007-05-22 12:00:33

Full phase II data on Fingolimod (FTY720) shows decreased depression symptoms. "New preclinical data, presented at the American Academy of Neurology (AAN) annual meeting in Boston, reflect the expanding understanding of FTY720's (fingolimod) mechanism of action in multiple sclerosis (MS), suggesting direct beneficial effects in the brain. The data suggest that FTY720 may have the potential to reduce neurodegeneration and enhance repair of the central nervous system (CNS) by modulating S1P receptors expressed on brain cells. Separately, new clinical data presented from the six-month Phase II study found that the proportion of patients with clinical depression was significantly lower in the FTY720 groups compared to placebo. These new preclinical data add to a growing body of evidence that FTY720 has multiple, specific mechanisms of action. The ongoing Phase III clinical development program includes comprehensive monitoring to further understand the clinical and safety implications of these mechanisms of action."

And more on Vitamin D
2007-05-22 12:17:17

Another review in regards to non-infectious factors that could contribute to MS and that lack of Vitamin D based on geography comes up again! And smoking is mentioned too... "As discussed in Part I of this review, the geographic distribution of multiple sclerosis (MS) and the change in risk among migrants provide compelling evidence for the existence of strong environmental determinants of MS, where "environmental" is broadly defined to include differences in diet and other behaviors. As we did for infections, we focus here primarily on those factors that may contribute to explain the geographic variations in MS prevalence and the change in risk among migrants. Among these, sunlight exposure emerges as being the most likely candidate. Because the effects of sun exposure may be mediated by vitamin D, we also examine the evidence linking vitamin D intake or status to MS risk. Furthermore, we review the evidence on cigarette smoking, which cannot explain the geographic variations in MS risk, but may contribute to the recently reported increases in the female/male ratio in MS incidence. Other proposed risk factors for MS are mentioned only briefly; although we recognize that some of these might be genuine, evidence is usually sparse and unpersuasive."


 
MS: The Women's disease?
2007-05-22 10:30:40

New research is showing that the amount of women to men ratio with MS is tipping further for women. Ugh! Come on! Let's keep the men in this club! ;) Okay, okay, let's just all leave the club, but seeing thats not an option, one can only hope...

The study, which will be presented at the American Academy of Neurology's 59th Annual Meeting in Boston, April 28 ,May 5, 2007, demonstrates that the two to one ratio of women to men with MS in the United States in 1940 has grown to approximately four to one in 2000. 'That's an increase in the ratio of women to men of nearly 50 percent per decade,'said study author Gary Cutter, PhD, of the University of Alabama at Birmingham School of Public Health.'We don't yet know why more women are developing MS than men, and more research is needed'

Cutter said researchers will need to discover multiple changes that have cropped up for women over the last several decades, together with the use of oral contraceptives, earlier menstruation, obesity rates, changes in smoking rates, and later age of first births.'We also need to ask the general questions about what women do differently than men, such as use of hair dye and use of cosmetics that may block vitamin D absorption,'he said. 'At this point we're just speculating on avenues of research that could be pursued.


 
Cyclophilin D for SPMS
2007-05-22 10:04:56

Interesting bad protein being researched over in Oregon and Italy and they're finding some good stuff. "Cyclophin D is a key regulator of molecular processes in the nerve cell's powerhouse, the mitochondrion, and can participate in nerve fiber death. Inactivating cyclophilin D strengthens the mitochondrion, helping to protect nerve fibers from injury. The findings are published in Proceedings of the National Academy of Sciences. "We're extremely excited," said Michael Forte, Ph.D., senior scientist at the Vollum Institute at OHSU and the study's lead author. "While we can't genetically inactivate cyclophilin D in people, there are drugs out there that can block the protein. Our research predicts that drugs that block cyclophilin D should protect nerve fibers from damage in MS."


Wednesday, May 9, 2007
 
Fingolimod screening appointment done!
2007-05-09 11:58:18

My morning starting with signing my life away on consent forms, then off to MRI. I was a little off guard as they needed to hook me up to an IV line to give me contrast while being scanned... (I usually don't get that with my regular MRI's) ...creepy being stuffed in the MRI tunnel and then feel this cool sensation go up my arm as they run the crap through my veins. Weird. Then I had more blood taken, cognitive tests done, a blinded Neurological exam where I could only answer straight laced questions to this nice doctor, another different full physical exam, a walking test (or EDSS I presume), a chest x-ray, and then finally a lunch break! Then a couple more hours to do some more cognitive function tests again, ECG, blood pressure, temperature, urine and pregnancy testing, more paperwork stuff and questions, then the Pulmonary Function test. That was fun. Reminded me of scuba diving breathing that way through a tube :) So, now the wait begins until all those tests come back. From there, I'll find out if I qualify or not to continue on to the trial! What a day.


Thursday, May 3, 2007
 
May is MS Awareness month in Canada

2007-05-03 09:51:24

Just happened on this posting... I had no idea! Jeesh. Perhaps I should log on to the MS Society's site more often! "Canada has one of the highest rates of MS in the world and women are diagnosed with the disease three times more frequently than men. These are two stark facts that serve as motivation for those who work to end the disease.

"It is with some humility that we acknowledge Canada as being a country with a high prevalence of MS," says Yves Savoie, president and chief executive of the MS Society of Canada and president of the MS Society, Ontario Division. "However, it is with great pride that I say that Canada is a world-wide leader in MS research and tens of thousands of Canadians are committed to ending MS in as short a time as possible." During May, MS Awareness Month, volunteers from around the country are taking part in fundraising events like the MS Carnation Campaign.



Tuesday, May 1, 2007
 
One week to go
2007-05-01 12:55:51

Well, it's one week today until I will forever change the non-medicating way I've been living with my MS. On the one hand, I'm feeling really positive and good about doing something about my disease. Whether it's being fully admitted to this clinical trial (I'm assuming I meet all the criteria at this point), or moving to a current day therapy I'm happier making a dent in what the disease is doing in me. I may not be able to predict, control or change what "it's" doing but I sure as hell want to disrupt it as much as I can! On the other hand, I have one last week to live with only the symptoms of my MS (few and far between these days) and not any potential side effects of medication. I feel like I should be taking these last days of med free life for granted as they aren't likely to happen again considering I can't hide from my MRI results. Nor would be doing myself any favours in not doing medication as I'm going to have to live with my MS for the rest of my life!