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, November 28, 2007
Fingolimod vs. Avonex Clinical Trial Appointment - 6 months!
My appointment last week went well. I think it was the first time I gave blood where I didn't even have the slightest reaction that I usually have! Yay! My chart has all these red warning notes saying that I'm at high risk of fainting. I laugh at that now! So cool for that lifetime of fainting to be gone just for going on this trial and making the effort to change that ingrained response.

So, I did the usual check-in stuff. Bloodwork, urine, ECG, eye exam, blind Neuro exam, regular Neuro exam (with the one I can talk to), Quality of Life questionaires, cognitive function tests and Pulmonary Function test. Wee! The blind exam is funny. It's pretty routine and I usually get Dr. Oger who I absolutely love! He's the doctor that gave me my diagnosis and I have a lot of respect for how he did that for me from a compassionate point of view. I can't talk to him during the exam really. I can only answer his questions. But he said to me that pretty soon with how many times I have to do this exam, I'll be able to just show him the next thing that needs to happen. it's funny how he asks questions too... he'll ask me to look down at the floor and then ask, is there any sensation you would like to tell me about? Or he'll ask, Is there any numbness you'd like to tell me about? He was doing the whole poke you with a toothpick thing, then checked all my reflexes. Then, with a straight face he asks me to move my ears and shows me how he can! I burst out laughing! I said, "thats not a part of the Neuro exam! Thats not fair! I can't do that!" It was pretty funny. Makes for a nicer atmosphere to have a little humour thrown into a day of non stop tests! :)

I forgot to ask for a couple things this time... I usually ask for my EDSS score and my blood pressure readings. My last EDSS score was 1.5 I think. I'll have to ask the next time I'm in. February is when my next appointment is at the 9 month mark.

Friday, November 23, 2007
One way to start the day
Now that I can feel a good part of my legs again, I'm back outside! I started this morning off with a nice hike/walk at Minnekhada Regional Park. It's soooo nice on a frosty morning.
Minnekhada Regional Park
So then I headed down here:
Minnekhada Regional Park
Climbed up here:
Minnekhada Regional Park
Found this glorious site:
Minnekhada Regional Park
Then circled back down to the dykes and watched the ducks and Blue Heron for a while:
Minnekhada Regional Park
It was a nice way to start a day, thats for sure. A little soul food.

Sunday, November 18, 2007
I just did my injection 6 minutes ago and my leg still hurts! It pinched really good when I inserted the needle, didn't hit a vein going in but I bled a good amount when pulling the needle out. I can still feel exactly where I injected the muscle with every step I take. Boooo. I'm questioning if my leg muscle I injected into was flexed a bit with the way that I was sitting. Could that do it? Would it hurt more injecting into my muscle when it's not fully relaxed? Any thoughts from you more experienced Avonex injectors?

The good part... It took 4 minutes round trip to do this injection. That includes getting the little band aids, alcohol swabs, gauze thingy to dab away the blood, setting up injection, putting needle in sharpie box when done, band aiding the hole left behind, packing it all up and recording my times and which thigh I injected in on my trial paperwork. Phew. Done for one more week.

On Tuesday I'm back at the MS clinic for my 6 month check in! Half way done the trial now! Woohooo! I'll be going first to St. Pauls hospital first thing in the morning for my eye exam, then drive to UBC hospital for the rest of "stuff". I'll be doing the life questionnaires, blood work, urine, Pulmonary Function Test, Neuro exam (one blinded, one not), general physical and I think that might be it. Needless to say, I'll be there all day! Oh and I wonder if I'll be doing the cognitive tests. I better not play any crib over the next two days just in case. It totally screws with my counting concentration if two numbers equal 15!

I love it when the bears go away

Now that the bears are gone I have one of my favourite suet bird feeders back up. Suet attracts all sorts of woodpeckers and a whole clan of them all showed up this morning in huge numbers! It's a lovely show and the bigger ones are loud! They certainly are pretty to watch when you can literally sit 4 feet away from them.
Piliated Woodpecker
Woody the Woodpecker
Northern Flicker and Hairy woodpecker
A Northern Flicker and a Hairy Woodpecker sharing the suet.
Downy Woodpecker
Female Downy Woodpecker and suet

Tuesday, November 13, 2007
Multinational Childhood Study
For those that are interested in new results that have come in on childhood MS, I have pdf copies of this full report. Send me a quick email and I'll send you a copy. Most interesting to me is the exposure to Epstein Barr Virus (EBV or aka Mononeucleosis). I've had it and within a year had my first symptoms of MS although I was already 23 at that time. Who else with MS has had Mono?

"Over 80% of the children with MS, irrespective of
geographical residence, were seropositive for remote EBV
infection. Seropositivity for EBV was associated with an
almost three times increased likelihood of MS compared
with age-matched and region-matched controls. Children
with MS also had signifi cantly higher EBV-EBNA1 titres,
and were more likely to have EBV titres in the highest
tertile, than controls. The higher EBV titres could represent
heightened immunological responses to EBV, as has been
suggested in a similar analysis comparing EBNA1 titres in
EBV-positive adult MS patients and controls.35 Studies of
T-cell proliferation to HLA-restricted EBV antigens in EBVpositive
children with MS compared with EBV-positive
healthy children are now underway. Increased EBV titres
might be due to episodic viral reactivation, a process that
has been postulated to occur with greater frequency in MS
patients than in individuals without MS, especially in
association with MS relapses.51 PCR analysis of EBV DNA
in saliva or plasma is required to ascertain lytic cycle
occurrence, and to correlate this with clinical disease
activity. Of note, to minimise potential cross-reactivity with
self-antigens, we specifi cally selected an EBNA-1 EIA assay
that relies on synthetic peptides, and excluded the Gly-Ala
repetitive sequence known to cross-react with self epitopes
from collagen, keratin, and actin.

Friday, November 9, 2007
A little more now
Well, since going numb last August I'm finally starting to feel my thighs again! Yay! Small steps I suppose as my shins down to my toes are still numb, but I'll take what I can get at this point. I do worry that this just might be what my legs are now from this attack. I can't help but think that way sometimes. Its funny too... you'd think with having less feeling in the place you stab a neelde into would be a bonus but it's not! I still felt that injection everytime!

Thursday, November 8, 2007
Oral Laquinimod
Yay! Another oral option being put to trial! this looks like a big trial after getting some solid results.

"Recently, Teva concluded a 36-week extension of the 36-week Phase IIb core trial, which demonstrated that laquinimod 0.6 mg met its primary endpoint. The data from this extension trial further confirmed and strengthened the results from the initial 36-week Phase IIb trial. The majority of the patients that have participated in the trial are now receiving treatment with laquinimod in a continued open-label extension trial. "

"Additional new data, presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) on October 13, 2007 in Prague, demonstrated that laquinimod reduced inflammation, demyelination and axonal damage in an animal model experimental autoimmune encephalomyelitis (EAE), indicating that the compound may have both anti-inflammatory and neuroprotective properties.
Based on encouraging results from various animal models, laquinimod is now being investigated for other autoimmune diseases. "

ATX-MS-1467 - Vaccine for SPMS

Another vaccine, but this time for SPMS. I always like seeing options for the SPMS folks... there certainly is not enough. I like the idea of a vaccine too... interesting concept over just symptom treatment.

"This trial has been very successful and clearly shows there are no safety and tolerability issues around ATX-MS-1467, said David Wraith, CSO of Apitope and Professor of Experimental Pathology at the University of Bristol. “Beyond this, one of our patients has shown a remarkable improvement in her eyesight. Since the optic nerve is acutely sensitive to inflammation and optic neuritis is often one of the first symptoms of MS, this early indication of efficacy is very encouraging. It suggests that treatment with ATX-MS-1467 can suppress the inflammation associated with MS,” he added. “Now we are excellently positioned to begin proof of concept trials.

ATX-MS-1467 has been specifically designed and developed to treat MS patients; these results prove the Apitope platform can produce effective clinical compounds,” noted Dr Keith Martin, CEO of Apitope. “Moreover, in business terms ATX-MS-1467 and the related MS diagnostic, which was recently patented, give us several interesting partnership opportunities.”
The ATX-MS-1467 Phase I/IIa open label trial was designed as a dose-escalation study to assess the safety and tolerability with all six patients receiving five escalating doses given 7 to 14 days apart of 25, 50, 100, 400 and 800 followed by a repeat of the 800 µg dose.

Monday, November 5, 2007
The leaves have fallen
Yay! Pretty much all the leaves have fallen so I spent today bagging it all. The sun was out in full force so I knew I had to capitalize on the timing. I just know rain must be right around the corner. Bagging leaves is not such a bad job. But bagging pine needles? I'd rather not! I do love this time of year though.

These guys are still around:
Pretty boy

These guys are gone now:
Ahh yes, bear season 2007 has begun!

And these guys are everywhere and have the greatest whistle!
Varied thrush getting some sun while the snow melts
(Varied Thrush for those curious and an old photo... there is no snow where I live!)