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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Tuesday, July 31, 2007
MS nurses have good things to say
I was at the MS clinic yesterday morning for my 2 month check in for the trial and a replenishing of drugs. I called my nurse my pusher. She laughed. The cool thing she told me is that I'm in that stage where the medication (whichever one) will be kicking in pretty full force having had 2 months in my system now. She said that the medication can't fix my symptoms, but that it will be affecting or holding off my disease activity for my immune system. That in turn frees up my immune system to be doing the right thing for me instead of the wrong thing in attacking me. She says that lots of patients report feeling "clearer". I'm all for that. Anyone else recall that "better" feeling after starting on meds? We chatted about which drug I think I'm on cuz I virtually have no side effect symptoms at this point. I told her that I change every other week at to which one I'm on. This week I can report that I'm on the pill :) Thats because I hit a vein during my last injection and bled like a stuck pig, but I don't have any site reaction even with doing that. So, I'm not on the injectable any more.

Almost forgot! I officially don't need to lie down or do anything different or special for giving blood! I don't faint anymore!!! YAY! I just have to keep talking during the procedure and I still do visualization techniques the day before. I'm pretty proud of myself for overcoming this. It's been a life long irritating, embarrassing thing in my life and I'm glad to have changed it. :) Clinical trials are at least good for something, no?

Sunday, July 29, 2007
Genetic breakthrough for MS -Interleukin-7 receptor alpha, or IL7R-alpha
Big news in the world of MS it seems. I just saw this posting saying that they've discovered a genetic component to MS! My question always is, now what? Can they block that genetic "something" in me to stop the disease? What? Can they take that gene out of me and viola! I'm cured? Interesting thats its associated with diabetes. I have that in my family background. "Until now, investigations of the human genome have turned up only a cluster of variants of genes on Chromosome 6, in the so-called Major Histocompatibility Complex, which regulates the immune system. But these genes were identified in the mid-1970s, leaving frustrated doctors to hunt for other culprits in the complex cascade of processes involved in MS. The new suspects play a role in guiding key immune cells, called T cells, which patrol the body for intruders. They carry the name of interleukin-7 receptor alpha, or IL7R-alpha, located on Chromosome 5, and interleukin-2 receptor alpha (IL2R-alpha) on Chromosome 10, which has previously been associated with Type 1 diabetes. A single change in the genetic code in IL7-R, and two changes in IL2-R create the dangerous variants. Each variant appears to boost the risk of MS by between 20 and 30 per cent. "Our finding is very important, because the genetic factors that are already known to be associated with multiple sclerosis only explain less than half of the total genetic basis for the disease," said Simon Gregory, an Australian-born geneticist at Duke University in Durham, North Carolina, who took part in the IL7-R work. The two studies, published simultaneously by Nature Genetics and the New England Journal of Medicine, were carried out by two consortiums of scientists, from the US and Cambridge University in Britain. The genetic variants were unearthed thanks to a comparison of more than 20,000 samples of DNA, provided by patients diagnosed with MS and those without the disease, living in the US and Europe. "People have been looking for genes involved in MS for 30 years," said David Hafler, a professor of neurology at Harvard Medical School, a lead author on the IL2-R study."

**Update - here's another good link about this for those that are interested.

Tuesday, July 24, 2007
Getting better
This weeks injection was (I think) the best one yet. My mom was over and I did it in front of her and that seems to help me just get the darn thing done. Although, she did comment "thats a big needle!" and I had to shut down that topic! Ha! I do think that I'm putting the needle in too slowly though. I have to pick up the pace on the stabbing motion and then I think I'll have mastered this whole process. I'm pretty happy about it. I had such huge apprehensions about the injections and it's nice to have overcome that challenge. And I didn't get any site reaction this time so now I think I'm on the oral Fingolimod medication and not on Avonex anymore ;) I'm back at the MS clinic on the 31st for my 2 month appointment for the trial. Seems like less is going to be done. A re-stocking of all the meds and then a physical exam, some blood and thats about it. Should a quick one this time.

Thursday, July 19, 2007
TRIMESTA (oral estriol) trial starting and fundraising
TRIMESTA (oral estriol) trial starting

Well, that didn't seem to take long for this type of therapy to keep moving forward. This is the one for women only though. Sorry guys. "Dr. Charles Bisgaier, Pipex's President, stated, "To our knowledge, this is the first gender-specific, oral, potentially disease-modifying agent that has entered later-stage clinical trials for the treatment of MS." Dr. Bisgaier went onto say, "Given the convenience of an oral drug therapy, such as TRIMESTA, we have received a lot of positive patient interest in this study and hope to continue enrolling at this positive rate." The Phase II/III clinical study is a double-blind, placebo-controlled trial that will take place at seven sites in the US and will enroll up to 150 female MS patients. Investigators will administer TRIMESTA along with COPAXONE, an FDA approved therapy for MS to women between the ages of 18-50 who have been recently diagnosed with relapsing-remitting MS. Previous Phase II Clinical Trial Results in Relapsing Remitting Multiple Sclerosis TRIMESTA (oral estriol) has completed an initial 22-month, single-agent, crossover Phase II clinical trial in the US for the treatment of MS in relapsing remitting patients, with highly encouraging results. The results showed the total volume and number of enhancing pathogenic myelin lesions (established neuroimaging measurements of disease activity in MS) decreased during the treatment period as compared to a six-month pretreatment baseline period. The median total enhancing lesion volumes decreased by 79 percent (p=0.02) and the number of lesions decreased by 82 percent (p=0.09) within the first three months of treatment with TRIMESTA. Following a six-month drug holiday during which the patients weren't on any drug therapies, TRIMESTA therapy was reinitiated during a four-month retreatment phase of this clinical trial. The relapsing-remitting MS patients again demonstrated a decrease in enhancing lesion volumes of 88 percent (p=0.008) and a decrease in the number of lesions by 48 percent (p=0.04) compared with original baseline scores (1),(2).

If you donated to my fundraising efforts

Here is where the money went! I'm pretty happy about that. "Two Ottawa researchers have been awarded a $2.4-million grant for their work in fighting multiple sclerosis, a chronic and often disabling disease of the brain and spinal cord. The Multiple Sclerosis Society of Canada recently awarded the money to a team led by Dr. Harry Atkins and Dr. Mark Freedman, who will continue a closely watched clinical trial involving an experimental bone marrow stem cell transplant therapy. That research has seen MS symptoms slowed in some patients and even some improvements in the ability to see and walk. "The idea behind this clinical trial is to replace the diseased immune system with a new one derived from the patient's own bone marrow stem cells," said Atkins, a scientist at the Ottawa Health Research Institute, and a bone marrow transplant specialist at the Ottawa Hospital. "First, we purify and freeze the patient's stem cells, then we use strong chemotherapy to destroy their existing immune system," he said. "We then transplant the purified stem cells back into the patient. "It takes time, but eventually these stem cells will form a completely new immune system - one that does not attack the brain and spinal cord - we hope."

Wednesday, July 11, 2007
Two injection reactions
Hmmm... my last two injetions seemed to give me two different reactions that I'll have to mention on my next trial visit at the end of the month. The first one was from the injection on July 1st. I still have a little hole where the injection was done and it's sore when I apply pressure. Almost like there's something in the hole that shouldn't be there. I removed the little tiny scab that was there but it just came right back and is still a little red opening. Weird. almost like it doesn' want to heal like all the others have. The second one is from last sundays injection on the 8th. I guess I hit a vein or something cuz there's this little blue bruising colouration around where the injection was done. But no pain, no needle poke mark, just the bruising "look". Not that I'm trying to figure out what i'm on.... but... ;) Maybe i'm just not doing the injections all that fluidly yet. One thing I know that seems to work for me is having someone (doesn't matter who) watch me do the injection. I don't stall nearly as long as I do when I'm alone. Whatever works right?

Wednesday, July 4, 2007
A guilty pleasure...
I can't help it... I have to shout it out! BIG BROTHER 8 STARTS TOMORROW!!! YAY! Let the summer fun begin! :)

One month check-in

I spent the better part of the day yesterday at the UBC MS clinic to do the one month tests for the Fingolimod trial. It was a big day for me as I made a choice to not lie down to get blood taken. That was my safe way so if I fainted I would not fall over anywhere. But, enough is enough, I need to be a normal person and sit in a chair to have blood drawn. So, I did! And I didn't faint! I figure if i can stab myself and give an injection, I can get used to all this blood letting too. I didn't get any of the sensations of fainting, but my one tactic and making thenurse ask me an open ended question just prior to stabbing me. That way I have to be polite and answer the question which takes me away from focusing on the blood being taken. I won't look at my arm either. That'd be tempting fate at this point! It's been interesting following my blood results. Nothing abnormal has turned up other than a low/normal blood glucose reading and a low vitamin B reading. Kinda interesting to find that out because it's not like I would know any of that based on my daily diet or my once a year visit with my family doctor. I noticed something the other day. I've been able to walk farther without having my legs go completely numb after 1 to 2 kms. I was talking to my massage therapist about it and I commented that "in the last month...". Could this be related to being on "a" med now for one month? Makes me wonder. It's a bit surprising too because the weather has been getting warmer and I'm feeling it. I also have this weird effect going on that my trial doctor wants me to watch. Just before bed some nights my feet go cold. Regardless of how hot it is, the sensation varies drastically from the rest of my body so it keeps me from falling asleep until my feet warm up. At first I thought this was just a winter thing. But now that my body is warmer from the general warmer weather its so obvious when my feet go cold. So, I have to look at my feet and report back to my doc what colour they are. He said to look for either white or blue and then they'll decide what thats about. Weird.

Sunday, July 1, 2007
Happy Canada Day!
Hope everyone is outside enjoying summer :)