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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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Wednesday, November 16, 2005
November 2005 Archive
 
The Tysabri debate continues
2005-11-04 17:16:00

Just saw this posting about how likely it is that Tysabri moves back to market. I've not been posting all the Tysabri news as of late as its all so speculative. But this posting on the Drug Watch site seems to cover all the bases. Mainly, Biogen and Elan say Tysabri is great and safe now, and the No side says it causes fatal PML. So, it's all in the hands of the FDA. It'll be interesting to see what they do. I haven't seen a date for that yet.

 


Synthetic version of a by-product of an amino acid - Tryptophan
2005-11-04 17:36:00

Scientists have discovered that they can stop paralysis in mice using (of all things) Tryptophan. They're moving this discovery to clinical trials to see if this can help in MS.

"In this study, Dr. Michael Platten of the University of Tuebingen, Dr. Lawrence Steinman of Stanford University and their colleagues fed the tryptophan metabolite to mice with an experimentally induced version of MS. It was given at the onset of the paralysis that develops in the animal's hind legs. The animals on the treatment fared a lot better than those on a placebo dose. The control animals had severe paralysis and couldn't walk. The treated animals had mild paralysis or none at all and could get around their cages. What's more, the scientists found that the substance inhibited the proliferation and activation of the immune cells that play a role in the disease process."
Two more done!
2005-11-04 18:16:00

My little adventure in to learning how to paint continues.  I only have one more class, but I think my paintings are getting a little bit better than the first. And even at that, its just a fun relaxing evening thing to do. Here's the second painting I did:

And here's the third one:

 


Macrophage Inhibitory Factor Causes Multiple Sclerosis Progression
2005-11-05 20:14:00

Another interesting article about finding those rotten cells that cause the attack on our myelin. So, now that they know which cells, they need a drug that can block them.

Researchers are confident that blocking the molecule macrophage migration inhibitory factor it will be possible for treatment of Multiple Sclerosis.

 

 


Itchy

2005-11-10 04:35:00

My massage therapist has been working hard on my numb legs. And he just took a course in nerves this past weekend and was keen to try to make my nerve paths starting talking to each other again. The numbness starting creeping up my left thigh (it was only as far as both knees) and so far after this last treatment, he's been successful in bringing it back down. The problem is I still have numbness in the lower half of my left leg. And its ITCHY. Most irritating. Its that kind of itch almost like when your tired and you start to rub your eyes. At first its a good feeling, and then its not stoppable!
      The bears are unbelievable here. They came last night, a day before garbage day no less. And they spread our garbage far and wide all over the back yard. They mostly drag it all away under the cherry tree. And then they lick our windows. I'm serious. I'll try to get a pic of it tomorrow. They even leave great big paw prints on our window. They're pretty dirty those bears.

About Me
2005-11-11 23:26:12

Hi, I'm Kim. This site provides a little insight to my journey of being diagnosised with Benign Remitting Relapsing MS on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos here. The New York Times even wrote an article about this blog and podcast.

  1. Married to Tod, no kids yet.
  2. Own a house on a creek outside of Vancouver Canada.
  3. Educated in veterinary medicine but had to leave the industry for lack of money. Still want to work in that field again one day.
  4. I have four brothers: one real, three fake.
  5. Love doing crafty things… knitting, cross stitch, painting objects, painting walls.
  6. The wildlife in my back yard are more inportant than the flowers I planted that they ate.
  7. I have a pesticide-dispensing license. It's completely useless.
  8. My job is a chaotic mix of dealing with sales people, implementation planners, production floor planners, credit folk, and admin staff.
  9. Every four to six weeks, my step-mom and I have committed to checking into a spa for the day.
  10. Looking for a better recipe for Chilean Sea Bass. Anyone?

Reviews Policy
2005-11-11 23:43:54

ABOUT THIS SITE AND PODCAST
The Mandatory Rest Period blog and Multiple Sclerosis Podcast are among the Internet's leading resource for research news, personal stories, fundraising tips, and support for people with M.S. More than 1,000 people with M.S. and their family members read the blog regularly and hundreds listen to the weekly podcast. On both the blog and podcast, we review a number of products related to multiple sclerosis -- from books to special exercise equipment to naturopathic remedies.

REVIEW POLICY
If you are an author/publisher or otherwise represent a product related to multiple sclerosis, please contact us first before shipping. Email is kimandtod@maffin.ca . We receive many requests to review products and we are selective. We will not accept delivery of any medication or drug samples. If we agree to review your product, we promise we will do it -- however, it will be our subjective opinion and submitting a book or product for review does not guarantee a positive review, only an honest one.

SHIPPING ADDRESS
To send us your book or product sample, please mail or FedEx to:

Kim Maffin
#242 - 255 Newport Drive
Port Moody BC
V3H 5H1
CANADA

If you are sending from outside Canada, please use FedEx. This avoids customs clearance fees and delays. We are not able to accept any deliveries which arrive with any taxes or customs fees owing. If you require the shipment returned, include a self-addressed return-paid FedEx form.


Its for real! I'm serious!
2005-11-12 06:14:00

A building is being blown up and in the process with raise money for MS! Seriously! Its happening in South Dakota on December 3.



Larry the Lesion is born!
2005-11-12 06:31:00

Big thanks to Chuck from http://www.videocdm.com. He created Larry the Lesion for us!
The image “http://www.todmaffin.com/blogs/ms/wp-content/LARRYtheLESION.gif” cannot be displayed, because it contains errors.
Tovaxin good news continues
2005-11-12 06:54:00

Phase IIb trials have been approved by the FDA and recruitment in Austin and Dallas, Texas is starting. So far a 90% reduction in attacks is being shown from the trials. Tim from over at ihavems.com sent me this info for anyone interested:

The best person to email is Shannon Inman sinman@pharmafrontierscorp.com. She works for the company and is keeping a file of interested people. There are several more studies that are in the works. The company wants to show that this works with all of the different types of MS, the different age groups, and the different levels of disability.

My Photos
2005-11-12 11:19:38

You can view my photos here.
Contact Me
2005-11-12 18:42:34

Email me at kim "at" maffin "dot" ca
Meet Larry the Lesion
2005-11-12 18:48:10

Meet Larry the Lesion
This Blog's Mascot!


 

Big thanks to Chuck from VideoCDM.com who created Larry the Lesion for us!


M.S. Books
2005-11-12 23:41:38

Also check out my reviews of M.S.-related books.


Look at what happened
2005-11-12 23:42:31

I gave Tod my passwords for the blog! Now its a whole new site for both the podcasts and my blog! Yippee! We still need to work on some stuff (upload the first 10 podcasts, ect) and unfortunately we can't import all the past comments. But I think its a nicer looking site now. We'll see. The flavour seems to change all the time anyways :)

The FDA Wants to Hear From People with MS about Tysabri
2005-11-13 21:13:24

The US Food and Drug Administration would like to hear from individuals who have MS about how they feel about Tysabri (natalizumab, sponsored by Biogen Idec and Elan Corporation). Tysabri was withdrawn in February 2005 due to safety concerns and is currently being re-evaluated by the FDA.

One of the roles of the FDA's Office of Special Health Issues is to serve as a channel through which patient issues and viewpoints can be brought to the attention of FDA medical and regulatory staff.

The drug's sponsors have requested a priority review of their application, which, if granted by the FDA, would result in FDA action within an estimated six months from the late September 2005 submission date, rather than the 10 months expected for a standard review.

If you or someone you know has MS and would like to express your opinion about the fate of Tysabri, contact:

Office of Special Health Issues
Food and Drug Administration
HF-12, Room 9-49
5600 Fishers Lane
Rockville, MD 20857 (301) 827-4460 or toll-free 888-INFOFDA (888-463-6332)

Sativex approved in Britain!
2005-11-15 13:56:18

sativexHi folks -- it's Tod here... Kim's at work so I'm doing this posting for her since this is pretty big news!


The British minister of drugs (what a title!) has announced that Sativex will be available in the UK through a "Canadian import scheme." Sativex is made by Bayer and is a cannabis-based drugs that relieves pain associated with M.S.
      Chris Jones, Chief Executive of the MS Trust commented, “We enthusiastically welcome this announcement on the availability of SATIVEX to those in the UK. For many people with MS, cannabis has been shown to be effective in managing symptoms such as pain, spasticity and sleep disturbance.  This trend has also been mirrored in past and ongoing clinical trials.”

Related: Download/Listen to the MS Podcast about Sativex


Cool new bottles
2005-11-18 13:44:51

Has anyone actually seen these being used? These bottles are a different shape so you can actually read the labels properly! SMRT :) I haven't seen any being used in pharmacies around me. 
I missed it! MS topic on Larry King
2005-11-20 09:32:30

I'm seeing a few people responding about it, but it doesn't sound like it was a great representation for the disease. Anyone care to comment who caught it?

 *Update - Heres a link to the transcript of the show:

http://transcripts.cnn.com/TRANSCRIPTS/0511/18/lkl.01.html



The day to get things done
2005-11-21 10:30:40

Today is one of those Mondays. I brought the car in to shop today. I have this stupid leak in my tail light that's pouring water into my trunk well. Not good. So, a friend of ours is working on it today. He needs it all day to dehumidify it though. The great thing is that the shop is a nice half hour walk away (or so) through an amazing park that follows the ocean. And, just for picturesque quality, we are in pea soup fog at the moment. So, as I walked aroudn the point all the ducks and Canadian Geese were squawking around and the fog is hovering over the water. Its beautiful. I had forgotten how much that environment rejuvenates me. We still have bears around though. The point always have signs posted saying when the last siting was. It was yesterday. So, the buggers haven't gone up north quite yet. And from the looks of our back living room window, they're still licking it. Sigh... what posesses a bear to lick our window is beyond me! The bonus of this morning's walk is that my legs didn't bug me. I almost forgot about them. Doing the scratch test now it seems my right leg isn't not numb anymore and the left is just numb to the knee. Interesting. Easy come, easy go I guess. So weird. Mind you, it wasn't as if I was walking at a good clip. I meandered my way and was taking in all the scenery, so didn't overheat myself or anything.


I still have a big list of things I want to do today... grocery shopping, Christmas
shopping.... Mostly I want to hear from Tod as he's in Newfoundland and I'm
JEALOUS! I'm dying to go there and we just couldn't make it happen for me to
tag along this trip. He's been taking lots of pictures though. Its such an incredible
place. One day.



Happy Anniversary to me!

2005-11-24 22:04:52


Well, its been one year of blogging. How fast the time flys. And still to this day I enjoy posting to this space I call my own.

I was at painting class tonight. We painted a black Jeso. I think it turned out pretty darn good. But I don't have my digital camera right now. Tod took it on his "across-half-the-country" business trip. I sure wish I was tagging along! He landed in Ottawa today and I haven't been yet. Sigh... if only one had more time and money to travel!

The bonus of the week is tomorrow. I have a massage appointment! The stupid numbness is lingering in the left leg so hopefully after tomorrow's session, some more will dissapate. And then, the knitting continues! I have so many ideas for Christmas and there's only a month left!


Oh, and Happy Thanksgiving to any American readers out there. I hope you all
had some good turkey and family time.



Tim's story

2005-11-25 20:50:19



I just found this artcile
about Tim from Ihavems.com talking about being in the Tovaxin clinical trial.
Good ink.