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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Wednesday, February 16, 2005
February 2005 Archive
A Request
2005-02-01 04:02:00

: I wonder if you would mind talking about the symptoms and how it
led to a diagnosis?

Sure. I have two "incidents" that have lead to my diagnosis. My most recent attack that brought me to the MS clinic where I got my diagnosis was an immediate onset of Sixth Nerve Palsy and partial Seventh Nerve Palsy. How I got the MS clinic was a little more convoluted. I went to the Emerg clinic and they couldn't tell me what was wrong, but that I didn't have brain tumours or a stroke. They said get to a neurologist which my family doctor would have to refer me to. I went to my family doctor who referred me to an Ophthamologist. The Ophthamologist diagnosed the
Sixth nerve only and referred me to a Neuro Ophthamologist. He diagnosed the Sixth and Seventh palsies.

So from there, he ordered me an MRI (brain only) and a visit to the MS clinis over at UBC. (insert 2 month wait here) In the meantime I went to a neurolgist on my own accord for a second opinion seeing as thats what the emerg doc ordered in the first place. That Neurologist agreed with me going to the MS clinic and also ordered another MRI (spine) and Evoked Potentials test.

MS clinic appointment arrived and with the tests I had and lesions showing as well and a prior incident, I was diagnosed with Benign RRMS.

That prior incident was numbness and tingling in both legs and one arm (in its worst) in 2001 that resulted in me getting an xray where they found a degenerated disc at L5, S1. My doctor didn't feel it was necessary to send me to a neurologist and that the numbness and tingling was because of the bad disc. The MS clinic felt that this incident was my first attack. The sixth and seventh being my second attack resultin gin the "multiple" needed for diagnosis.

Hmmm... I should add that Sixth Nerve Palsy is full double vision. The muscle controlling movement is paralyzed. I had that in my right eye. This caused awful balance problems and I couldn't focus in on anything unless I closed one eye. Seventh nerve (the same one as Bell's Palsy) is the muscles that control facial expression. I had that from my eye lid to my mouth only. (fyi - bells continues down the whole side of the body) The Seventh nerve also included loss of taste on the right side of my tongue. Blech.

And I think thats it. The only symptoms I carry forward now are loss of balance especially after walking for 1 KM or more. And I react to the heat. I always have... but I thought that was just my extra layer of insulation I carry ;)

2005-02-01 04:31:00

Todays walk: 2KM (roughly), 30 minutes.

Gmail gone crazy!
2005-02-05 17:54:00

Holy Smokes! I have 50 Gmail invites now. Anyone want one? Let me know your email address and I'll send one your way!

2005-02-05 17:55:00

So my 3rd week back at work has gone reletively well. I'm working 6 hours
a day now and will probably do that again next week. Then move back to proper
full time hours the following week. Work is a little crazy these days... we were
just bought
by Kodak
! So the vibe is all a little scary at this point. We are not sure
what Kodak intends to do with all of us... but of course the speculation is that
we'll all lose our jobs and get buy out packages. If I hear one more coworker
say "thats not a Kodak moment" I'll barf.

I'm rather optomistic though. I think that I'll lose my job. Yup. And I'm sure I'll find a new job no problem. But, I'm hoping that they transfer my job to New York and then ask me to bring it to the people there! Thats right! A free trip to New York! Yes please! Me, me! I'll go! When we went through a merge before, I had to go to Boston to bring back a job and those guys also were flown out to us too. I ended up going to Boston for 3 trips to train folks out there. So, I'll just have to wait and see :)

Ten Random Things About Me

2005-02-05 18:15:00

  1. Married, no kids yet.
  2. Own a house on a creek
  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. Its 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?

CTV's W-FIVE show about MS tonight
2005-02-06 01:13:00

A little late... but for the West coasters its on at 7pm on CTV. Just says that
the show is about latest treatments for MS and someone risking their life for
(I assume) a trial treatment.

The Pioneers

2005-02-06 03:51:00

Okay, I watched the show tonight. It was a really good doc on a clinical trial using Stem Cells and Chemotherapy to stop the MS from progressing any further in your body. Its all being done out of a hospital in Ottawa. You can watch some of the show here. Its a pretty risky procedure.. the main gist of it being that you give up a bunch of your bone marrow and they harvest all the stem cells they can from it. Then they purify the stem cells. Then they essentially nuke your immune system with the Chemo to nothing (including killing off the immune cells that attack Myelin). Once you are at the lowest you can be without dying you are given back your own stem cells so that you can get your own immunity back without the MS. There is a risk of death though... one patient in the study did die from liver complications, but they think they have revamped the study to be safer. So far everyone else in the study are not getting new lesions or any new MS symptoms. Oh, and the patients seemed to all have progessive MS and not just RRMS. So, interesting, scary, exciting and what seems like a positive step forward in the research field. I'm going to try to find some more in depth info about it.

2005-02-06 04:21:00

So here is what I found posted in May 2004 about the show I just blogged. They
manipulated the media well avoiding talking about the 10 patients that this did
not work well for. Although they have stated the using this therapy with people
that were not in progessive states of the disease would likely work better. Here
is the small amount of data I found... (can't link to it though...)

Autologous Bone Marrow Transplants

The most intensive treatment of MS to date involves various degrees of immunoablation and restoration of the immune system using autologous bone marrow-derived stem cells. Dr. George Kraft[11] presented the data from his Seattle, Washington-based group that enrolled 26 patients (median age, 41 years) with severe MS, including 8 with primary progressive MS (PPMS), 16 with secondary progressive MS (SPMS), and 1 with RRMS. Their median EDSS was 7.0 (range, 5.0-8.0). Most (24) had failed single or multiple previous therapies with immunomodulatory or immunosuppressive agents. Participants received high-dose immunosuppressive therapy followed by autologous stem cell transplantation. The median follow-up was 12 (range, 3-36) months.

With this treatment, 9 patients remained neurologically stable, 6 actually improved (including 3 patients with PPMS), but 10 deteriorated, using the definition of an EDSS 0.5-point change. Two patients with enhancing lesions on MRI at baseline still had these at 1 year following the transplant, 1 of whom reportedly had a flare of MS associated with the administration of granulocyte colony-stimulating factor (G-CSF). Two others with no baseline enhancement developed enhancing lesions. One death was reported due to a rare complication of Epstein-Barr virus infection believed to be due to use of rabbit-derived antithymocyte globulin.

Together with European researchers, who have also performed similar treatments on patients with advanced disease, Kraft's group agreed that this therapy needs to be given earlier in the course of disease when patients are less disabled. This is precisely the cohort targeted by the Canadian MS BMT Study Group,[12] who reported on the safety of their regimen with data from the first 4 of their patients. Because of reported exacerbations using the stem-cell mobilizer G-CSF (as was seen in the Seattle-based study) the University of Ottawa researchers used cyclophosphamide alongside this agent and noted no exacerbation of either clinical or MRI activity. Their longest follow-up was only 6 months, but their initial safety data were encouraging. They plan to treat 24 patients over the next 3 years.

2005-02-06 06:22:00

Today's walk: no pedometer, and we didn't check the clock! Duh. But I'm really
tingly now. Right up both legs to my hips. Time for yoga.

Cruel and unusual punishment, don't ya think?

2005-02-06 06:44:00

Puzzle Alarm Clock - Valentine's Day Online Gift Shopping Australia - Unique Presents, Gift Ideas, Novelty Adult Products, Big Boys Toys and Home Gambling accessories
Perfect Spot
2005-02-11 00:23:00

Perfect Spot
Originally uploaded by OnlineKim.
This is where I write my blog from.... there's always someone in the little bed :)

6 hours

2005-02-11 00:27:00

So this is my second week at working 6 hours a day. All is going well although I'm feeling overall just a little more tired than I usually felt. Next week I'm moving to 8 hours a day. Back to normal working hours. More importantly, back to normal pay cheques!!

I've been thinking a lot about going on vacation these days. Mostly an Alaskan cruise! Vacationing in the cold! Yay! That'll suite me perfectly :) Not so much for my husband though. He can sit in a nice warm hot tub and I'll sit out of it sipping a milkshake. Mmmm... sounds like heaven right?

2005-02-12 06:57:00

The antics next door continue. Have I mentioned there are two houses being built
right next to my house? It sucks! So, we're the last house on a cul-d-sac,
and these morons always blockade us/my car in our driveway. We have to go find
someone and tell them to move their damn trucks so we can leave our house. Its
become way too much though... to have to ask to get out anytime you want to leave
your own house!? No thanks!

So we have tried to be good and just ask them... but you see, they don't learn. They actually don't care that we want to leave our house and they are blocking us. They don't care that they are playing bad music screeching out of a ghetto blaster aimed at my house all day long. They don't care that we have to live with a port-o-potty on our front door step! Seriously, I'll post a pic if you don't believe me. Its totally gross and they won't move it.

Anyways, we've been made to feel bad for asking them to move, I have been
verbally attacked and sworn at, and we have had enough. We warned them. Now, we
have this frined in uniform who will come deal with them! Yay! The cops are our
friend. They told us to not even bother communicating with these construction
workers. Just phone the cops and they'll come and deal with them and ticket
them. Ahh... so nice to have someone on your side that can make an impact. :)

2005-02-13 04:44:00

My husband just posted a little tidbit and pic about our house renovations that are about to begin. You can check it out here. And if you live in BC, pay close attention to the builder NOT to hire.
And Again!!
2005-02-13 20:47:00

Okay, so it's Sunday. Our ONE day without having to hear contruction noise.
At 9:30am I hear the excavator start up. Ummm what?! It's Sunday!! Hello stupid
contruction worker guys! You said it yourself that you can only make contruction
noise from Monday to Saturday! So, we phoned the cops again. No warning to the
construction people. The guy on his digger all of a sudden has a cop pull up beside
him and tells him to come over and takes some ID. I was inside my house sneaking
a peek through our kitchen window snickering. About 10 minutes later all the construction
guys are in their cars leaving and the cop leaves. My phone rings and its dispatch
telling me that they shut them down and to call back immediately if they try that
one again. Ahhh.. peace and quiet now. Is it Spring?

2005-02-20 18:12:00

Wow, it feels, looks and smells like Spring in my back yard. Complete with a National Geographic style showing in my backyard that mating season has begun. Lucky for us we don't have kids yet and need to have that conversation! We call one of the dead maples with a flat top the "humpy stump" now. Lovely eh?

Anywys... This last week at work has been an okay one. I am back to working full time! Yay for me! I made it back to the world of normal working people and am NOT on Long term disability anymore. However, I'm awfully tired this weekend. I have to be really careful through the week that I don't get carried away with something and go to bed too late. I seem unable to get away with a 6 hour or even 7 hours of sleep (like I used to) without feeling horrendously tired the whole day. So I believe as I've read elsewhere that this must just be the new normal for me. Okay fine, I'll get more sleep ;)

Yesterday (just to add to my eye tiredness) I drove an hour in to the Fraser Valley to go to a speciality knitting/stitching store with a fellow cross stitcher :) Love going to new places to find different and unique yarns and patterns! The lady there was so nice and felt awful that we travelled so far to come to the store that she gave us both 10% off cards for our next purchase. Nice! And now, its time to get comfy chair out on the deck and absorb as much Vitamin D I can while the sun is out! Happy Sunday all.
A different kind of tired
2005-02-26 03:21:00

>So, slowly but surely I'm figuring out my limits... Work this week leading up to month end is mentally grueling. Lots to do, in a fast paced environment, with really bad consequences if errors happen. So, sleep is of the utmost importance right? Um ya. So one night this week I got about 6 or so hours of sleep. I paid so dearly for it! I was really out of it all day at work that my slow pace meant working a longer day. How frustrating. Why is it so hard for me to just go to bed at the right time! I know the outcome if I don't will suck!
Raising some money!
2005-02-26 03:24:00

I forgot to post this! My husband, me and a girlfriend have signed up to take part in the Walk for MS in my neighborhood! Its part of the Super cities Walk/Run for MS campaign. I'm going to walk the 5km route and hopefully rasie as much money as I can in the process. I haven't got the online page set up properly but I'm going to post it once I get it done. Stay tuned! :)
Wanna pledge me?
2005-02-27 18:36:00

So, here's the link to my fundraising page! From there you can click on the sponsor button and leave a donation. :) Thanks!