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, June 28, 2007
Assisted Suicide in MS
 
Heartbreaking to see a story like this come out. I spotted it on the ouch blog and I had to read it through completely. I'm stunned at what this disease can do to some people. She is only 7 years older than I am and her throat was becoming paralyzed. She choose to die by assisted euthanasia and had her husband take her to Zurich where laws are different than here and she could get the assistance to make it happen. Sad. "MacDonald said Elizabeth asked him to take her to a clinic in Zurich that helps patients who want to die, but who are too ill to kill themselves. Swiss law allows assisted suicide, provided it's done for unselfish reasons. Staff at the clinic gave Elizabeth a glass of barbiturates and told his wife she would die if she drank it, said MacDonald. "She said, 'I understand that,'" MacDonald recalled. "And she drank it down without any hesitations, just like that."


Friday, June 22, 2007
Today's friendly visitor :)
 
He's looking up at the apple tree


Thursday, June 21, 2007
 
Tracing MS From Childhood to Adulthood

A new study out is finding that childhood MS takes longer to develop disability in walking by 10 years over average aged (32) adult diagnosed MS. Very interesting. It'd be great if they could figure out why though! "When MS started in childhood, it took about 10 years longer to worsen to the point at which patients had trouble walking, the study shows. But childhood cases began nearly 20 years earlier than adult-onset cases. So even with the decade of delay in worsening symptoms, patients with childhood-onset MS were younger than adult patients when walking became difficult. "Patients with childhood-onset multiple sclerosis take longer to reach states of irreversible disability but do so at a younger age than patients with adult-onset multiple sclerosis," write the researchers. It's not clear why childhood-onset MS took longer to worsen to that point than adult-onset MS. About half of the children with MS took drugs that target the immune system, but "none of these drugs has a proven effect on the long-term development of disability," write the researchers."

Tovaxin keeps giving positive results from the lastest trials

I'm facinated by this therapy and where it will go... 92%reduction in relapses? Damn, thats a good number! "The one-year extension clinical trial enrolled 8 subjects. Tovaxin therapy achieved a 92% reduction in annualized relapse rate in patients who received two treatment doses of Tovaxin eight weeks apart and were monitored for an additional 44 weeks. Patients enrolled in the extension clinical trial were earlier treated with a T-cell vaccine developed from myelin basic protein reactive T-cells. The company noted that data from the extension trial indicates that subjects previously treated with T-cell vaccine can be safely and effectively retreated with Tovaxin. The Tovaxin Phase IIb clinical study known as TERMS will include 150 patients and will evaluate the efficacy, safety and tolerability of the Tovaxin T- cell vaccination with clinically isolated syndrome and relapsing-remitting multiple sclerosis patients. Opexa completed patient enrollment in the 52-week TERMS study on May 17, 2007. All patients who complete the TERMS trial will be eligible to participate in an optional one-year extension study.

Enrollment Begins For Study Of MBP8298 In Secondary-Progressive

I do believe there are some readers here who are interested in this potential drug... so here's some more news coming out about it. "Eligibility and Details: To enroll in this phase III study, people must be 18-65 years of age, with a documented history of secondary-progressive MS. Only people who are positive for the HLA DR2 and/or DR4 genes can participate; a blood test will be taken to determine HLA status. Participants must have had no relapse in the 3 months before the study. Participants will be randomly assigned to receive either 500 mg of MBP8298 or inactive placebo intravenously every six months for two years. The primary goal of the study is to determine the effectiveness of MBP8298 as measured by the EDSS, a widely used rating system of clinical status. Secondary objectives are to assess the drug's effects on disease activity observed on MRI (magnetic resonance imaging scans), relapse rates, quality of life and fatigue. Contact: For information on sites that are currently enrolling, please consult the study's listing on clinicaltrials.gov

TRIMESTA (oral estriol) potential oral med in trial

Did I read this right? This trial for an oral med is only for women with MS? Err... I think there's a gender missing in the MS population that might need a treatment option! Okay, so this is a drug already in use elasewhere in the world for menopause in women! No wonder men wouldn't be taking this drug... Anyways, they just got a $5 million grant from the NMSS and are recruiting. "TRIMESTA is an orally active, immunomodulatory and anti-inflammatory molecule the has been approved and marketed throughout Europe and Asia for approximately 40 years for the treatment of post-menopausal hot flashes, but has never been introduced in North America. Estriol, the active ingredient in TRIMESTA, is a weak estrogenic-based molecule that is produced in the placenta by women during pregnancy. Estriol is considered to play an important role in the immunologic privilege offered to the fetus during pregnancy and is also thought to be responsible for the spontaneous remission of Th1-mediated autoimmune diseases of women (such as multiple sclerosis and rheumatoid arthritis) during pregnancy, especially during the third trimester."



Tracing MS From Childhood to Adulthood

 
A new study out is finding that childhood MS takes longer to develop disability in walking by 10 years over average aged (32) adult diagnosed MS. Very interesting. It'd be great if they could figure out why though! "When MS started in childhood, it took about 10 years longer to worsen to the point at which patients had trouble walking, the study shows. But childhood cases began nearly 20 years earlier than adult-onset cases. So even with the decade of delay in worsening symptoms, patients with childhood-onset MS were younger than adult patients when walking became difficult. "Patients with childhood-onset multiple sclerosis take longer to reach states of irreversible disability but do so at a younger age than patients with adult-onset multiple sclerosis," write the researchers. It's not clear why childhood-onset MS took longer to worsen to that point than adult-onset MS. About half of the children with MS took drugs that target the immune system, but "none of these drugs has a proven effect on the long-term development of disability," write the researchers."


Monday, June 18, 2007
Wait for the rubbing alcohol to dry...
 
I was back at the MS clinic this morning for my 2 weeks check up. I had to give my medical diary and charting of when I take my meds, give blood and urine and thats it. Short but sweet on this visit. But I learned a very important thing... Before doing the injection when you swab the site, I'm supposed to wait until the rubbing alcohal drys! Otherwise it stings big time going in and stays stinging for at least a half hour! Duh! I guess I'm trying to go too fast with getting the procedure done that I'm just making it more uncomfortable for me! Anyways, I'm glad to know that becaues the first one with the nurse was so painless and last weeks was just a bit of a sting... But yesterdays was more of a sting that lasted a while! Then my hand started shaking once the stab was done and I hate that reaction! Oh and the good news about todays blood work is that I sat in a chair and didn't lie down! That is a first! And I didn't faint nor getting any fainting feelings or sensations! Yay! I'm pretty happy about that :)


Sunday, June 10, 2007
 
2nd shot done!
2007-06-10 15:27:21

Woohoo! I did my second Avonex (or not) injection today. So, it was a bit different sitting in my house alone with my needle posed and there wasen't a lovely encouraging nurse saying "just do it!". I tried really hard to not make today "needle day" but as I sat there with the needle about 2 inches above my thigh I really had to self talk myself into doing it. And this time, the needle stung a bit going in. But once I made the plunge (literally speaking), I just got it done. My hands didn't shake afterwards either this time so I guess I was a little more emotionally accepting of the whole process. Anyways, since starting this trial last week, I really don't feel any different. I had a couple fatigue days last week, but thats nothing new from time to time for me. I don't think I'm feeling any side effects from either potential drug I'm on. Weird feeling. Nice though.


Wednesday, June 6, 2007
 
My little domain while under observation at the hospital
2007-06-06 16:44:29



Here's the room I was in while having the blood pressure taken hourly. I had all my little time wasters around me :) And here is my brand spanking new sharpie box!

My own little sharpie box!


Tuesday, June 5, 2007
 
Officially on Fingolimod... or Avonex now!
2007-06-05 13:21:29

I spent the day yesterday in the UBC hospital from 8:30 and finally released at 6PM. I took both my first doses of the trial medication which was all very interesting. I learned to inject myslef (!) and I actually did much better than I thought I would! My nurse was even telling everyone that I saw for other tests how shocked she was at how well I did :) Pretty happy about that. I was really shocked at how non-painful an intra-muscular injection was. I was totally expecting it to hurt big time and it just didn't. Crazy to have it all in my head about what it would be like only to be proven completely wrong. We'll see how I do at home next week doing it on my own without my nurse saying "just do it now, go ahead." :) I think it was "the other Heather" that sent me the butter analogy... the needle goes through your leg like a knife going into a pound of butter sitting on the counter. So true! My hands did start to shake once I was done the injection though. I didn't get the wash of fainting feeling, but I was a bit shaky for a few minutes afterwards. Phew! I can see a small poke hole in my leg from where I did the injection, but nothing else around it. no redness or tenderness.



Then I took the first dose of the oral med and had to stay in cardiology for 6 hours of observation. I was having blood pressure and all sorts of heart readings done hourly. This med can lower your heart rate when you take the first dose so they watch you really carefully. I'm not supposed to know if I'm on that drug though so I don't know what my readings were for the whole time. I do know that I had to be kept an extra hour and had to go walking and do some stairs to get my heart rate up some before being released. My heart rate was 66 in the morning and then I heard my nurse say to the doctor when she was going to release me that my heart rate had come up so I was clear to leave. Hmmm... so either I'm just really relaxed in the hospital environment or I'm on that med and it did what was expected.

It's an interesting head game now. I want to try to figure out what I'm on! hahaha. Bad. I shouldn't be doing that! I will find out in one year from today what I'm on. So, I'll just have to be patient! Beth - 51 injections to go! :)