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, October 28, 2008
Sleep specialist
Kinda cool. I was complaining to one of my clinical trial nurses that I was tired a lot of the time but that I don't believe it's my MS. It's that I sleep so poorly. It's the curse, I tell you be a light sleeper. Hate it! On average I get 5 or so hours of poor sleep. So, anyways, she forwarded me to a sleep specialist. They sent me a big questionaire and I have to record for two weeks my sleep pattern. I have to record how long I sleep, how many times I woke up in the night, how long I was awake for those times and how many hours each night I sleep.

In the questionaire, they asked a couple questions that I found interesting. One was about being too hot at night. I definately have this as one of my issues. I overheat, or because I don't seem to feel temperature in my body well I am fluctuating all over the place and can't sleep through the changes in temperature. The other question was about having shocks in your legs. I thought this was an MS symptom cuz I get it during the day too and not just at bed time. and I get them in my arms. So, it'll be interesting to see what they say and if they'll want me to stay at the sleep clinic under monitor. I'd sure like to sleep better than I do these days.

Thursday, October 23, 2008
The patients on alemtuzumab have an increase in brain volume, which means the brain is repairing itself
Whoa. This is some big news. A Leukemia drug thats letting the brain repair damage. Pretty cool. Although there seem to be some side effects that are a bit strange. Better to live with those side effects than what the MS will do over time though? Hmmm...

"Alemtuzumab works by destroying lymphocytes, a type of white blood cell. By shutting down this part of the immune system, the drug seems to block the damage to brain tissue that occurs in MS.

But three per cent of those taking alemtuzumab in the trial developed a life-threatening autoimmune condition.

During the trial, 20 per cent of those treated with alemtuzumab developed an over- or under-active thyroid gland.

Three per cent of those in the alemtuzumab group developed a low platelet count that increases vulnerability to bleeding — a complication that can be easily treated if recognized early, the researchers said, but that led to one death during the study.

"The data convincingly demonstrate that intensive immunosuppression can dramatically reduce the accumulation of new inflammatory lesions and focal [neuron] scarring and the rate of clinical relapse in patients with recent-onset multiple sclerosis," neurologist Dr. Stephen Hauser wrote in an editorial accompanying the study.

The findings highlight the value of very aggressive therapy at the beginning of the disease and helps medical researchers address the relationship between the inflammatory and degenerative phases of the disease, Hauser added.

Monday, October 20, 2008
Back to clinical trial appointments tomorrow
The MS clinic wasen't able to schedule all my appointments into one day last month so I'm finishing up my Neuro Opth dialate-your-eyes-with-crazy-awful-drops appointment and Pulmonary Function test tomorrow. And then, I think I have a break until middle of December before I go back for more blood and all that jazz.

I'm still happy being on the clinical trial for Fingolimod. I know I'm on it for sure now being in the extention and it seems to be doing what it's supposed to be doing. My numbness and fatigue have really ramped up in the last week, but it's been over a year since I've had a relapse. Yay! I'll see where the numbness gets up to before making the dreaded "I think I'm having an attack" phone call to my nurses. So far, the burning is staying at my shin level and only casual numbness, no burning up to my mid thigh. Charming sensation isn't it?

Wednesday, October 15, 2008
Some stuff
Decision made! I'll keep blogging :) Thanks for all your kind encouragement. I was out on a walk to the lake by my new place. I made some friends:

Canadian Goose at Lafarge lake

And I did survive puppy sitting Linus... barely! Holy what a smarty pants little Sheltie. A lot of work to be herding things all the time. And a lot of work to be herded all the time too! ahhahah.


Tuesday, October 14, 2008
MS sufferers feel the benefits of vibration trial
Weird! What an interesting concept. I wonder if this will go somewhere. Cool.

"A trial to determine the benefits of vibration therapy for multiple sclerosis sufferers is having an immediate impact on participants, one stating that she could feel her feet again, and another saying the treatment left her legs tingling and buzzing in a way they hadn't felt in years.

Study supervisor Dr Steve Stannard says the trial was devised to see whether side-to-side alternating vibration therapy was able to assist MS sufferers, who often became unable to move their muscles normally due to damage caused in the central nervous system.

“People with MS have a neural condition, which means that their brain often can't generate enough neural input to have their muscles contract and move in a fully co-ordinated way,” Dr Stannard says. “The vibration stimulus is thought to cause a reflex contraction of muscle so in MS patients this might be therapeutic - it's a way of side-stepping the brain and making the muscles contract.”

Tuesday, October 7, 2008
To renew or not to renew
Hmmm.. my domain expires in 7 days... do I keep blogging, or no... Hmmm...

Thursday, October 2, 2008
Puppy sitting begins today!
Little innocent looking Linus

Wish me luck with little Linus! :)