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, August 16, 2005
August 2005 Archive
2005-08-01 21:17:00

We interupt the usual broadcasting of this blog:

Okay, I'm going to put it in writing. We're going to adopt two new kittens! Well, we hope to anyways. We have our two 4 year old kitties (Echo and Flick), but we have this giant house and much room for two more. So we're phoning around to the local SPCA's and other shelters to see what they have. We really want one of the kittens to be calico, and both have to be female. So, if your in lower mainland or just outside of, drop me a line if you know of, have seen or have leads for me :)

2005-08-03 05:21:00

One shelter down, and no kittens brought home. This was a pretty horrid place. All the cats were skittish and sad looking. Horribly poor conditons. Ugh. It left us with a real sad feeling in the bottom of our hearts. Shouldn't we go back and "rescue" them? All my medical background in the Veterinary field says no. We have two lovely cats and I couldn't bare risking them to what disease these ones had. We both stripped down and scrubbed when we got home to get the smell off of us. You know something's wrong when that happens. Sad way to end an evening :( Sigh...

I do hope to bring you news of another subject providing I get the proper approval from the recipent. I should know in the next day or so. Its pretty interesting... stayed tuned.

2005-08-04 04:33:00

    Wow, look what happens when Tod isn't working! I get a whole new site! LOL :) Feedback welcome of course, but I think I like it. He bought me as well, so I'll switch that over when it all comes available to use. Fun times.

Sativex wanted by visiting Americans who need it
2005-08-04 04:53:00

Okay, as promised, I want to post an email thread that I have had with someone who will remain an un-named person out of respect for their privacy. I'd like you all to read it and respond anonymously or not with any help you could provide if you feel so inclined.
   So, here is the email that I received:

My son has a spinal cord tumor and is in constant pain. Though he is on opiates, smoking marijuana gives him the most relief from pain. He is an ideal candidate for Sativex. There is just one problem. We live in Florida and have no access to this drug. Do you have any ideas? I will be in Vancouver August 19th to 21st.

And my response:

Thanks for emailing. I personally don't take Sativex, (nor smoke pot) but clearly where I'm from its second nature for many of the population to just have, be around it amoung friends or take it for medicial purposes. I don't know the medical laws for your situation, although I'm curious to know more. Is your son coming with you on this trip? Could he see a doctor here, say he had run out of his prescriptions and wanted a new script for Sativex? Unfortunatley, I don't know the answer. I have also yet to have anyone contact me who is taking Sativex, but some anonymous people who smoke pot. I also checked the Canadian online pharmacies and it seems they don't have it available. Have you contacted Bayer (the maker of the drug)? Could they suggest anything? Could I have your permission to blog your email (I wouldn't post your email address publicly) to see if anyone locally would respond and provide some insight for you?

And on a more personal note, I can't imagine the pain level your son
must be going through with his health. It must have been an incredible hard
journey getting a diagnosis like that. I hope for his sake the US government
turns around their decision, or else, come on up north.

And one more response to fill in some answers:

My son will not be coming with us. He is totally confined to a wheelchair and long distance travel is not possible. I agree with you that the Canadian on-line pharmacies are not carrying Sativex yet. Do you you think your local drug store might carry it or might be able to order it?

So, anyone have anything to add to help this family? The only thing I can add for sure is that Sativex is a prescription drug that can only be purchased with a prescription from a doctor. And I don't know of a doctor that would write a script without seeing the patient and having the drug justifiably prescribed.
     Hey Bayer - if you're reading, could you respond and advise if the American public can have a US doctor prescribe Sativex and then get it from an online pharmacy? Will online pharmacies carry it soon? So many questions, so little answers for those that need it.

Only click if you want to see an actual brain with MS
2005-08-04 05:12:00

CNS Pathology
A well needed "Beat the heat" posting
2005-08-05 20:50:00

A posting on the Canadian MS Socity's site about keeping cool this summer. Lord knows I need to read this! It's cooking hot out there today!

Docs Identify Possible MS Risk Factor: Viral Antibodies
2005-08-05 20:59:00

MS Neighborhood : Docs Identify Possible MS Risk Factor: Viral Antibodies
This article is interesting. There doesn't always seem to be a whole lot outthere on the reason's for people getting MS, so this is an interesting step in that direction.

If you have MS and want to take part in a survey...
2005-08-07 05:05:00

Multiple Sclerosis Research - Coping with MS - The Ohio State University

This is an online survey that would take about 30-40 minutes to fill in. Holly Chalk is the Psychology grad student in Ohio that is heading this study and is an MS'er herself. 
Maybe it's just the heat?
2005-08-07 05:26:00

A few things have happened lately that are strange and bizarre and of course can only be explained by the unexpaliable tendancies of MS. About a month ago I lay down in bed and at that moment my head hit the pillow (I sleep on my back) the whole room went into crazy vertigo mode. About 3 seconds later, poof! Its gone.
     Then there was the falling incident which can really only be explained by loss of balance. I shouldn't have fallen like that just cuz I slipped on my ankle a bit!
     The third and more irritating one has happened maybe 3 or 4 times now. And again, I'm getting into bed and lie down, grab a book and when I open it and start to read I feel like my whole body is trembling. I don't appear to be moving at all, from what my husband can see, but I feel like my body is shaking. Like an internal motor has been turned on and I can't turn off the humming. About 5 mintues later, it eases and I feel nothing. Weird, weird, weird.
     I guess I feel a little more sensitive about those type of symptoms as its almost been a year since the double vision kicked in. It was hot out just like it has been again these days. Maybe thats the trigger? Either way, I've been happy with my lack of any new symptoms until now, so I'd like to keep it that way!!

Show 1: Introductions
2005-08-07 11:25:34

Kim introduces herself and her M.S., we talk about some favourite M.S. blogs, news about Sativex, and help us name the podcast!

Download/Listen to Show 1 

Is this the first MS podcast?
2005-08-08 04:31:00

Tod convinced me that we needed to do an MS podcast.  So we did! He is just in the midst of posting it and you'll be able to download it from the link on the right hand side. Enjoy!

Show 2: Kim's Story
2005-08-08 11:24:27

Kim shares more of her personal story with M.S. in this episode -- from her first bout to what her symptoms are today. Plus, what's the "right way" to ask someone about their chronic disease? Plus, we've asked Bayer to do an interview with us about Sativex -- it'll be interesting to see if they step up to the plate. And we're looking for your walking stories -- if you have M.S. and walking is your exercise of choice, how do you do it when you get "the stumbles"? Call our voicemail line at 1.206.888.MSMS to let us know!

Download/Listen to Show 2 

Show 3: 2010 Campaign Launches
2005-08-09 11:23:22

This morning, the National Multiple Sclerosis Society launched the Promise 2010 Campaign. In this episode, Tod interviews Dr. Timothy Coetzee, Director of Research Training Programs for the society to find out more. Topics covered include children with M.S., how Dr. Coetzee is helping train a new generation of M.S. researchers, and more. Please call 1.206.888.MSMS if you have any comments for the show!

Download/Listen to Show 3 

Humbled and Honoured
2005-08-10 04:55:00

Across Canada there are MS Bike Tours being held to raise money for the Multiple Sclerosis Society of Canada. I am humbled and honoured that one of Tod's co-workers, Tom, is riding the race in MY name! Seriously, I couldn't think of a kinder thing to do. I know I won't be able to take part in in the ride myself, but I sure would like to help Tom meet hit target to raise $1000.00 for future research!
       So, if you feel like supporting the MS society could you pledge our friend Tom Jokinen? If you click on the link above and click "Pledge a Cyclist" in the right hand column it will take you to the search page. Type in Tom's full name (as seen above) and it will take you to both rides he's participating in.
       And Tom - thanks for riding this year and all the past years to help raise money for MS. We really need it!

Show 4: The Ever-Changing MS Wristbands
2005-08-10 11:20:14

So, what exactly *IS* the official colour for Multiple Sclerosis?! We wear blue wristbands (the international MS colour), but now the U.S. society is selling red wristbands. Can't we all just pick one colour?

Also, in this episode:

  • Tysabri: Is it back?

  • David asked Kim what her vertigo feels like, plus a possible new symptom: Electrical feet!

  • Becca asks what the difference between "mild" and "benign" M.S. is

  • Kim asks Tod what HE thought about hearing her diagnosis last year. (Much cuteness ensues. You have been warned.)

  • And once again, we BEG people to leave a voicemail on our show line: 1.206.888.MSMS

  • Tod whines about our horrible experience building a cabin on Bowen Island
Download/Listen to Show 4

Not all MS patients form lesions in the same way
2005-08-12 04:39:00

Found an interesting article on a study thats coming out:

During plasma exchange treatment, the patient’s blood is removed and the blood cells are mechanically separated from the fluid plasma. The patient’s blood cells are then mixed with replacement plasma and the mixture is returned to the patient. Mayo Clinic MS experts including Moses Rodriguez, M.D., Brian Weinshenker, M.D.; and Mark Keegan, M.D.; previously found plasma exchange may help restore neurological function in approximately 45 percent of those experiencing sudden, severe MS attacks whose resulting disabilities did not respond to high doses of steroid treatment.

Dr. Keegan, first author of the study, points out that plasma exchange is a treatment for severe MS attacks when standard treatment with corticosteroids fails; it is not a treatment to suppress future attacks or to restore neurological function that has been absent for more than three months.

More good news about Tovaxin
2005-08-12 04:41:00

Tovaxin(TM) is a trivalent formulation of attenuated myelin-peptide reactive T cells (MRTCs), which are derived from peripheral blood and produced ex vivo as myelin basic protein (MBP), proteolipid protein (PLP) and myelin oligodendrocyte glycoprotein (MOG) reactive T cells.

In addition to the safety and tolerance indications, the study concluded that MRTCs in patients with MS can be depleted by Tovaxin(TM) treatment. Multiple Sclerosis Impact Scale (MSIS) and Kurtzke Expanded Disability Status Scale (EDSS) clinical measures are improved.

Full article can be found here.

Ongoing safety evaluation of Tysabri
2005-08-12 04:45:00

Dare I post about Tysabri? Well, some good news in a couple articles (1 & 2)  siting no new cases of PML and other opportunites for use in Crohn's Disease or Arthritis. Hopeful return to market date in early next year.

Show 5: Fundraising, Glyconutrients, and MS blogger Erik Smith
2005-08-12 11:18:04

In this episode, we get our first listener voicemail! Plus, what is the deal with glyco-nutrients and M.S. And we interview M.S.-blogger Erik Smith.

Download/Listen to Show 5 

On CTV Saturday- radical MS treatment documentary
2005-08-12 18:02:00

I just saw advertised the same documentary that I watched several months back about a radical treatment in clinical trials here in Canada in Toronto I believe. Its airing on CTV at 7PM on the show called Wfive tomorrow night (saturday). Its a good watch if you haven't seen it before. I'm going to PVR it and see if they have added any further updates to it.

Show 6: Kim's First-Symptoms Anniversary
2005-08-15 11:17:18

Our best episode yet! We roll out the new theme music, and a short documentary with Kim's family talking about her first symptoms (that's Kim's mom, pictured right, in the studio taping her segment).
    Plus two (count 'em! -- two!) calls from M.S. people. And our news report about tysabri, the first M.S. quiz, and much more!

Download/Listen to Show 6 

Today: The one year mark since getting Sixth Nerve Palsy
2005-08-15 19:50:00

One year later, and I have my vision back. Life is grand. I remember being totally confused, I had full on double vision (two complete images side by side), I couldn’t drive or walk all that well as I had no balance. And I didn’t know what was wrong with me. I also remember being tired. All the time. I was sleeping 12 hours every day.

Many things have come with the passing of a year for me. I am at peace with my diagnosis. I feel like I’ve learned so much about my past health from it and I’ve made good positive changes for the future as well (no more stress!). I dont’ fear the future with “it”, I just feel better prepared.

I’m doing a podcast later today (after my massage) about it being one year later, so have a listen if you have time! I think Tod has some surprises for me too… I keep hearing him mixing something and then he stops when I come in the room  ;)

Where does all the time go?
2005-08-19 06:02:00

Everytime I look at the clock it's wayyyy past my bedtime. So, I'm paying for it now. I have that tired feeling that makes my balance really crappy. I hate that! So, I'm pretty glad its the start of my long weekend.

Last weekend I painted our back deck. My step dad is moving all the pieces of wood so that there aren't 2 inch gaps inbetween them. But its a giant deck! I would guess about 800 square feet. So, we got to the halfway point and sanded it all down and put down two coats of paint. The problem is that it didn't dry for 3 days! I think the heat was preventing it from drying it was just so hot out. I'm pretty happy that I didn't overheat while painting too ;) But then terential rain start falling and the deck is all dry. On to the rest of it this weekend.

We did adopt two little kittens 2 weeks ago... they're still sick though. Major upper respiratory infection that they just don't seem to be able to kick with antibiotics. So, I took them back to the vet again today for another once over and we're trying a different drug and see if that helps. Poor little girls. They just want to play and have full run of the house! All in due time I suppose.

Show 7: Stayin' Cool
2005-08-22 11:16:20

On this show: Friday's Child blog and its "Easy on M.S. Eyes" function... a cool web site to rate your neurologist... the M.S. quiz... how to stay cool in the summer -- and get free cooling products (!)... Tovaxin trial patient site.

Download/Listen to Show 7 

Possible MS diagnosis with some questions
2005-08-24 03:32:00

 Could any American citizen's familar with your employment law, MS related employment standards, ect please have a read of the below email? I'm certain there are tonnes of places that "seeker" can go to get answers but I’m only familar with Canadian health care and employment standards. The big points as I see it are:

  • Seeing a neurologist or doctors for further investigation without health insurance?
  • Can a doctor report you to an employer with a new diagnosis?
  • Anyone on meds that have helped them with tingling? 
  • Where to take french lessons while on the road so you can meet that last requirement to come live here  

So, if you have the time, “seeker” could use some help. Have a read of his email below. I will also cover these points on the podcast, so if you want to leave a voice mail and tell us where seeker should start, call 1–206–888–MSMS.  

I don't want to call for fear I'll be identified. Yes, it's a
remote chance, but one I don't want to take. I will understand
completely if you get so much email/comments that you can't respond
individually, so don't worry about hurting my feelings if you don't.

I think I have MS. I'm 53 years old, white, male, US citizen, and have
asked my doctor about it. It all started about 5 years ago when I woke
up one morning and found that my right hand was tingling, much as if I
had slept on it wrong, but the feeling didn't go away in a few minutes.
I didn't really think a lot about it, believing that it might be a
normal part of aging. Several days later, the left hand had started
doing the same thing, shortly (a couple of weeks) followed by both feet.
Over a period of months, the feeling advanced toward the body so that
now it's above the elbows and knees. When I asked my doctor, he related
several diseases that might cause that symptom, including syphillis,
diabetes, vitamin deficiency, and MS. He did testing for the first three
and they were negative. He then sent me to a neurologist who interviewed
me briefly, watched me walk, etc., then hooked me up to some torture
machine that shot electricity through my arms and legs. That test was
normal, and he then told me it was "probable" MS, didn't refer me for
any more testing, and told me that if it didn't go away in 2-3 years (!)
to pursue more testing. I wasn't satisfied with that answer, but lost my
job with insurance benefits shortly thereafter and have yet to get more
where I could either a spinal tap or MRI scanning. I've talked to
several people who have had spinal taps and none said it was something
to be desired, although some of the literature I've read on the web
about MS says it's definitive for diagnosis. I have been told (perhaps
erroneously?) that tingling in itself without either pain or numbness
isn't enough.

The tingling only very rarely rises to the level of pain, but it's
always there. It's more noticeable at some times than others, but never
goes away. It's similar to that "vibrating body" feeling that occurs
right after using a lawnmower or weedeater or riding a motorcycle.
There's another reason I don't want to be IDed: I have a CDL (commercial
driver's license) and drive a semi truck for a living. Diesel vehicles
are notorious for vibration, and that sometimes seems to exascerbate the
tingling in my limbs. I'm afraid to do much more in the way of diagnosis
now for fear that my doctor could cause me to lose my license and thus
my job. Do you have any information on that possibility?

I've also noticed that the strength in my hands has changed so that I
can't grip as tightly as I used to. For instance, I can't pick up a bag
of cat food or litter unless there's a handle or I cradle it underneath.
I have also dropped something as light as a coffee cup because I just
couldn't hold it. I've noticed no other really serious symptoms on a
regular basis, although anomalous things happen on an intermittent
basis. One of those which is rather uncomfortable to reveal is something
that may be purely age related: the lack of sexual performance. That in
itself has caused me to become celibate for the past 3+ years. I've also
had a few of the "sparks" episodes you mentioned as well as a few
tremors of a minor sort. I've seen depression and fatigue listed, and
that's sometimes a problem for me also. All of these symptoms seem to be
gradually getting worse or more often, so I'm beginning to get somewhat
worried. In the US, you can sometimes get disability from the feds, but
you have to have a diagnosis first with medical information available,
and I can't afford to do that on my own, so it's almost a "catch-22"
there. Do you have information on where someone here could get diagnosis
at a reduced rate or free?

From what I've read of the different classifications, I don't know for
sure which one fits the best, but I'd liken my experience as more moving
up a ramp rather than the up/down (remitting-relapsing) or stairstep
model presented for some of the types. I for sure don't have any time
when I don't have the tingling; there is no off period.

I know that this may be somewhat rambling in nature, but I'd appreciate
you addressing my comments with any information you have which might be
helpful, either by return mail or on your podcast.

Thank you

Healthtalk topic: Celebrate Success: Improving Life for People with MS
2005-08-25 02:32:00

On the Healthtalk site tomorrow evening, the topic is on:

The MS Leaders of Hope are a select group of patients and caregivers nominated from within the MS community for spreading helpful ideas and inspiring and motivating others with MS to improve their quality of life. We'll have all three of last year's winners on our program. Join us to see how their ideas might change your life or at least your approach to your disease.

Heart breaking day
2005-08-27 05:39:00

About a month ago now, we adopted two cute kittens. They both immediately started sneezing and clearly weren't healthy, but no worries, as my background and education is in the animal health field, so I whipped them over to the hospital I used to work in for their help in getting these little ones healthy. I really didn't think it was a big deal as lots of kittens with unknown backgrounds have upper respiratory viruses. It's totally treatable and not a big deal.

We treated them with every known medication and finally after many ups and downs, one them was really not getting better. We finally decided to start testing for the big diseases and it turns out that she has FIP (Feline Infectious Peritonitis). This is a deadly disease and there isn't a cure, only treatment to try to ease symptoms. So, today we elected to end her suffering and have her euthanized. It's been hard to think that little tiny girl had so little chance at life with the cards she was dealt. Its a sad day here as we get used to the changes that have happened that we so didn't want to go through.

This is Gouda
2005-08-27 18:41:00

Gouda (above)

For anyone living in the lower mainland or close by in BC... Unfortunately, with having Gouda and Brie living together means that Gouda is also infected with the Coronavirus from Brie. But the good news is that she is only a carrier as she kicked the virus and it did not further itself to be FIP like it did in Brie.

Gouda is rambuctious, sucky, lovey, happy and healthy. What it does mean is that we can not introduce her to our other cats as they are negative and she would infect them. They could be vaccinated, but there is only an 80% chance against them getting the virus. And sadly, as much as we have fallen in love with Gouda, we can't risk the lives of our other two cats. So, if you know someone or are that person who has no other cats and would want to adopt her from us, we would greatly appreciate any interest.

Gouda's requirements are this: indoor life only (she could for the next 3 years shed the virus to others), no other cats unless they are also positive for the virus and not showing symptoms, dogs are totally okay as this is not a transferable disease, and most importantly, a loving home that would match our love for her. She is completely healthy now, and will be for the remainder of her life, she just needs the right home situation and people to love her. Thanks.

Are you part Viking?
2005-08-27 18:56:00

A new report out suggests a link to a Viking gene being a carrier of MS.

MS appears to be most frequent in areas where the population is largely of Northern European origin. In North America the disease is most common in Southern Canada and in the parts of Minnesota where large numbers of Finns settled. The disease is rare in Asia and Africa.
      "The most recent studies in molecular genetics in different universities suggest that the effect of genes on the geographic appearance of the disease is greater in Finland than previously believed", Tienari says.

Currently experts feel that MS is not caused by genetic factors alone. Instead its emergence is believed to involve a combination of genetic and environmental factors. Seven genes believed to increase the risk of MS have been identified in Finland.

Wobbly Art exhibit opens in New Zealand
2005-08-28 03:15:00

I love, love, love the name New Zealand's Otago MS Society gave their new art exhibit showcasing people's artwork who have MS. Wobbly Art. Thats great. I hope its a great success!

Possible Test May Help Diagnosis MS Early
2005-08-28 03:21:00

An excerpt from some interesting research coming from Spain:

A team of medical researchers headed by neurologist Luisa Villar, MD, at the Hospital Ramon y Cajal in Madrid, Spain, wrote in the journal Archives of Neurology that they recently developed a new, more sensitive, diagnostic test to detect levels of
IgG in the cerebrospinal fluid of people suspected of having MS.

In all, the test was more than 96% sensitive and had a specificity of over 92%, the researchers reported. When they considered the value of the test in only the MS patients, the study investigators found it still provided 96% sensitivity and more than 99%
specificity.  Sensitivity represents the probability of a screening test to correctly diagnose a disease. By contrast, specificity represents the ability of such a test to rule out a disease in a patient.

"The accuracy of this OCGB method reinforces the value of cerebrospinal fluid studies in the differential diagnosis of MS," wrote Villar and her colleagues.

PBS Documentary on MS called Unwanted Companion - The Mystery of MS
2005-08-28 18:57:00

This documentary is playing all over the place. Here's the PBS page for info on when you can watch it. Its starts here on the west coast in a half hour at 12:30!

Show recap:
Multiple Sclerosis is a chronic debilitating auto-immune disease that affects over 400,000 people in the United States, most of whom live in the Northwest. MS's cause and cure are unknown. Its symptoms mysteriously come and go, making it a difficult disease to both diagnose and live with. Though much is still unknown, real progress is being made in answering MS's mysteries. Unwanted Companion looks into recent medial and research advancements agains the disease; and, through the voices of actress Teri Garr, country western singer Clay Walker and others, the story of life with Multiple Sclerosis is told.