Saturday, March 29, 2008 selling Awareness Ribbon Ornies

What the heck is an "ornie" you ask? I wondered that myself, but figured any friend of mine who's selling them must know what they are doing. I got a free one in an order of candles that I got from her. I'm addicted to all the scented stuff she sells from the jar candles to the bath products, it's all top quality and hand made to order.

Turns out, an "Ornie" is described as follows:
These air fresheners are made made from clear polymer beads that are colored and scented and then baked into shapes. The finished product is a beautiful air freshener that resembles stained glass but feels like plastic and is flexible and unbreakable.

I mentioned to her that I would like an Ornie that she sells, only in an Awareness Ribbon shape and to be the MS orange color. She then came up with the idea of doing Awareness Ribbon Ornies and donating a portion of her proceeds to your charity of choice. I was touched by that idea and told her if she got the product up there on her site, I would blog about it and try to get her some business.

I've been hooked on her products for a couple of years. All her scents are scrumptious and fit any occasion. If I'm having a good day and want everything to smell like roses, I get out my candles and voila! Rose Garden! If I'm down in the dumps and having a bad day, all it takes is the scent of Apple Pie to bring me around.

And the best part is she's selling all this stuff at AFFORDABLE prices. I'm not related to Donald Trump, so I have to count my pennies and scrimp and save to make ends meet. I quit smoking so I figure I can indulge in something that makes my house smell good instead of like an ashtray for a change.

These ornies are ony $2.75 each and the fragrance lasts way longer than any other air freshener I've come across.

She had a fire last year and her home burnt to the ground along with her business (she's a stay at home mom who is into making candles, melts, soap, bath bombs, silky suds bath powder, and ornie air fresheners and selling them online). She's trying to get her product line reestablished as she had to start over from scratch.

She's been there for me during my worst of times MS wise, so I thought I could give her a little shout out here to help get the word spread about her wonderful products.... returning the favor.

Here's a link to her product page with the Awareness Ornies:

Pick any scent you like. Find out what all she offers (in scents) here:

You get to choose the charity to which she will donate 15% of her proceeds and the NMSS (National Multiple Sclerosis Society) is one of them.

Tuesday, March 25, 2008

The Placebo Effect

As defined on, the Placebo Effect is:

Placebo Effect
Healing effects which are based on the person's own self-healing capacity, but which is triggered by the belief that they are receiving an active medication.
Now, I realize that the clinical trial I am in, CFTY720D2302 aka TRANSFORMS, has no placebo, so there can be no true "placebo effect" for me, but the idea that this phenomenon has been documented and has a name fascinates me.

"Healing effects which are based on the person's own self-healing capacity..." Does the very definition concede that we have the capacity to think ourselves well just with the power of the brain?

It brings to mind cartoons of the coyote and the road runner...where the coyote runs off the cliff while chasing him. He treads air for a while, staying up there. It's only when he looks down and realizes that there's nothing beneath him but a thousand feet of air that he actually starts to fall.

Is that what a placebo effect is like? Do people in trials that have a placebo want so badly to be getting the real thing that they are treading air and doing great simply because they think they are?

What if I pulled apart one of my supposedly Fingolimod capsules and found out there was nothing inside, and then had my shot substance tested only to discover it was sterile water? What if I wasn't getting any real medication at all, but this experiment was all about the Placebo Effect?

A big, elaborate test where you have to convince the patient to be a willing participant who knows they have to be getting some kind of real substance, but in actuality it's all fake and they are recording how well you self-heal based on the idea that if you are made to believe you are healing or in remission, then you will heal or go into remission regardless of the substances you ingest or inject.

I have always been a very impressionable person. I remember once I had to have an injection of dye for a CT I was having. I knew that it could make me feel warm all over and had some other noticeable effects. I had my eyes squeezed very tightly shut so I couldn't see her poking the vein in the crook of my arm. But seconds later I said "I smell something funny...I have a weird taste in my mouth!" and I started to panic.

She said "That's odd because I wasn't able to get into your vein good enough in that arm and I'm going to have to try the other haven't gotten any of the dye yet."

That's just how it's always been with me. I can imagine very real, very scary side effects of imaginary things. So, what if all the benefits I am experiencing during this clinical trial are all of a self-induced, self-healing nature?

I'm sure the trial involves one of the two very real substances they said I would get -- either FTY720 or Avonex -- but what if all these great results are not really from what I'm taking but because of the power of wishful thinking? I'm so psyched up about this trial that I am not willing to let myself consider the possibility of having a relapse.

Kind of like Mitt Romney's wife thinks she's put herself into remission with Equine Therapy. That would never work for me because I hate horses. There, I said it. Yes, hate me if you want, but I don't like horses. I've ridding 2 and got thrown to the ground by the first, and the second one decided he didn't want to go up the hill on the path. Oh no, he wanted to run down the hill under every low branch he could in order to knock me off, so I'm a horse hater.

No, what works better for me is to give me a pill and say "take this every day and you won't have any more MS relapses." "maybe."

Oh, and be sure to scare me by saying "if you miss taking it for 8 straight days you will have to be observed by a cardiologist upon redosing." Wow! That did it for me. I have missed a total of 2 pills in the last 6+ months. Both times it was on a day I went out of town with my mother and sister on a rare family outing. I was an hour's drive away each time I said "Doh! I forgot my pill today!"

And the shot could be the real thing, but I have convinced myself so completely that I have real Fingolimod in my capsules that the shot has got to be sterile water. Pretty cool trick if I'm getting the real Avonex then because I have all the side effects from it that you'd get with sterile water.

I'm fascinated by this Placebo Effect stuff and the power of the mind. There's a lot of MSers out there who are sick of hearing "just think positive thoughts" when being told by well meaning folks how to control their disease. The truth is, there's no real controlling of does what it darn well wants to.

But if I can keep myself treading air just by taking these pills, then I don't want to look down because I'm happy believing I'm running on solid ground.

Monday, March 24, 2008

And now for something totally unrelated...

I got Japanese spam today. I wonder how my gmail determined it was spam. And how do I know if gmail got it right? It might be an important message that I just can't read. Should I go ahead and Delete Forever?

On a side note, I'm getting really sick of all those spammers assuming that since my name is Jeri I must be a guy and an inadequately endowed one at that. Note the subject lines of the other emails. *sigh*

Sunday, March 23, 2008

A glimpse of me through other eyes.

Today is Easter. (Happy Easter)

The family tradition is to gather at my mom's house and gorge ourselves on all kinds of food, usually prepared by my sister even tho she'd really like to take ONE holiday off and not cook, but that's another story and if she wants to complain about it, she should start her own blog. (Wow, am I Queen of the Runon Sentence or what??!)

My eldest brother has a new girlfriend and has been MIA at the past few fact, I can't remember when the last time I saw him actually was, but I'm thinking it's been a pretty good while.

I was really eager to see him because the topic of my hair, and how it needs to be cut, has been the first subject to come up every time we get together and since I cut a foot of it off since last time I wanted to see if he'd notice. Nope. I had to ask him if he liked it. He did, but mentioned that another 6" or so could come off. HAHAHA

He did tell me several times that I look great since the last he'd seen me. He said I'm no longer "tentative" in the way I move around. I guess I used to walk like I expected to keel over and fall down, or like my legs would buckle. Anyhow, he said I looked great and it made me feel wonderful. He was happy to hear it's been 10 months since my last relapse and I filled him in on as much as he cared to listen to about the trial. I can go on and on and bore people to death with all the many fascinating facts about this trial when they only asked "so how have you been?" in a rhetorical way.... not really expecting a play by play reenactment of everything that's happened since the last time I saw them.

Other people have hobbies that interest them. I have this trial. It's the only real excitement going on in my life at the moment.

So here he is looking at me, as I take my gamble with my life/health/MS, and what I see in the reflection of his eyes is mirrored back at me. I'm holding a winning hand. You just can't beat an Ace high straight flush. I'm seeing that in the many months it has been since I last saw him, I have made an impressionable improvement in my health. It's so reaffirming that it's got me all pumped up. Come on, Fingolimod...momma needs a new pair of nerve endings!

It beats the heck out of people whispering in the other room that you seem to look like you've taken a turn for the worse. This is much MUCH better!

Until next time, may you be relapse free or at least having a good day!

Happy Easter, ya'll.

Friday, March 21, 2008

Hormone in Pregnant Women May Help Fight Multiple Sclerosis ( or maybe NOT!)

I came across this article today about Estriol, the hormone produced by pregnant women that is being investigated as a treatment for multiple sclerosis due to it's protective attributes toward myelin.

Dr. Barbara Giesser at UCLA Medical Center says, 'Women with M.S. tend to have less relapses and generally do well while they're pregnant.'

Color me skeptical, but my very first symptoms came on during the 5th month or so of my last pregnancy. My stomach itched and tingled with pins and needles from mid-line front to mid-line back on the right side only. This lasted several weeks with the itching going away, and being replaced by numbness.

My wonderful (said in a dripping, sarcastic tone) obstetrician's opinion was that I probably had shingles and he just shrugged it off and said nothing more. Come to find out, had it BEEN shingles, it could have been a very serious matter for the baby. It wasn't shingles as I never had any kind of a rash, just the sensory symptoms.

Nothing more was ever said or done about this mysterious bout of "shingles" and I went on to forget it ever even occurred until many months later...after my official MS diagnosis. And now, 9 years later, I can look back and say for certain that it was my very first relapse. It was a classic example of how all my relapses go. I start out with a deep, insatiable itching that can't be touched by scratching skin. I'm guessing this is because it's the nerve itself that is itching as it's being attacked. Then, the numbness and tingling comes, followed by either more numbness, or weakness, or a combination of both with a pinch of spasticity thrown in for good measure.

So, I could play the "what if" game all day when it comes to why my MS decided to descend upon me during my most difficult of pregnancies. Maybe it would never have MS would never have made itself known...if I hadn't gotten pregnant. Who knows? One thing is for certain -- I'd never trade my 9-year-old son for being MS free!

But I don't care what the new studies show, I'm not an Estriol fan. After all, it didn't seem to protect me during my pregnancy. But then maybe I'm just weird like that. Or maybe I don't really have MS...(yeah, that's a thought...) Well, gotta go, the Denial Express is about to leave the station and I'm hopping on for another round trip (I'll be back as soon as I give up thinking this might not be MS; short trip).

Tuesday, March 18, 2008

I am the bird.

What makes up a person in their entirety?

It's not just the shell of flesh and bone
all wired together by nerves.

I know this because inside me there is a bird.

It wants to get out and fly.

It wants to soar above pain and worry.

Above the frustrations and limitations.

Inside there is boundless joy and passion.

There is a spirit that knows no boundaries.

MS might rob my flesh and bones of
the nerves that wire it all together,
but it will never touch my bird.

She sits inside and dreams
of soaring high above the clouds
where the sun always shines
and she can be free.

When I close my eyes, I am the bird.

When I am the bird,
together we flee my bodily cage
and leave MS behind.

The bird and I soar the heavens in peace.

There's more to me than my flesh and bones.

MS can't take that from me.

Wednesday, March 12, 2008

Disability Relate Products

I was on an internet search for some therapy type bands or something to help my 84 year old mom exercise her legs at home when I came across this site:

Disability Information and Resources

I think it's mainly for wheelers, but it seemed apparent that MSers in general -- wheelchair or no -- might find something useful there.

In digging a little deeper to see who owned the website and why they would be driven to compile such an extensive list of links, I discovered to my amazement that the owner/author is a man named Jim Lubin who became a quadriplegic when he suffered an attack of Transverse Myelitis. This man created this (and many other additional websites) using a sip and puff switch to type in morse code.

I find this to be incredibly inspiring.

He's been featured in many articles through the years and he is also shown in this very informative video on that addresses the issues of computer accessibility for handicapped persons.

I wrote to Jim requesting an interview and am patiently awaiting a reply. In the meantime I couldn't wait to share with you a small portion of the wonderful stuff I came across on his site. Here are some highlights:

The list could go on and on. If you have a moment, please do visit his site and have a look around. I'm sure you will be just as inspired and filled with awe as I was.

If Jim is kind enough to respond to my email requesting an interview, I will post it here in due time to share with all. If I don't get the interview, well at least I tried and have posted the links to the info here.

I've found new inspiration in this man who is less "able" than I to not dwell on what I may have lost to my MS, but to be inspired to continue on despite whatever losses, using what I still have at my disposal.

I'll be adding a permanent link to his site in my side bar under "Things that Inspire me".

By the way, Mom, (if you are reading) I promise to get back to finding those exercise thingies for you. You know how easily I get distracted.

Until next time, may you be relapse free or at least having a good day. :-)

Sunday, March 9, 2008

I must be good at MS; I keep getting awards.

Not everything about Multiple Sclerosis is bad. I've got some perks I can only thank my MS for...opening up a whole new world of cyber friends, and getting to use the blue spot when parking.

As for the former, I had a once-in-a-blue-moon, all-the-planets-aligned, good-hair-day type of experience today. I got TWO (2, yep you read that right) awards for my blog on the very same day. Sally Fields, quit hogging the microphone because I have to shout out to these folks who love me.

First (because I got this one first) I got this pretty award from Danielle who's been a cyber friend since long before I ever got over thinking "blog" was a funny word and actually started using it as a verb.(or is it a noun? Because I blog my blog, so I'm confused.)

Now, Danielle is an artist who dabbles in altered art and blogs about it. She's really very good although she doesn't give herself credit for it. She blogs in a whole different blogosphere from the MSers I know, so here we have the potential for the two cyber worlds to collide and artists will mingle with MSers and find out, in the process, that there are some MSers who are great artists while maybe there is an artist or three out there who also happen to have MS. The two worlds could create some great cross over friendships...

The "You Make My Day" award...
The rules for the "You Make My Day" award are to re-present it to 10 people whose blogs bring you happiness, inspiration and make you feel happy about blog land. Let them know through e-mail or by posting a comment on their blog so they can pass it on. Beware you may get the award several times, and if you do, consider yourself really, really loved. So to pass it on and keep the love going ~ here are 10 of the 100's of blogs that keep me inspired and bring a smile to my face. Please check them out when you have a few minutes...perhaps there are some new friends to be made!

Here are 10, (in no particular order and I may be double "awarding" them since I don't know a whole heck of a lot of bloggers and have to give out the other award as well):

For always making me smile, often making me ponder things I hadn't thought of, and sometimes spew my drink on my monitor:

But wait! There's more! Act within the next ten minutes and... (oh, wait, I thought this was an infomercial for a second). Since all this link copying and pasting is taxing my brain and fingers, you previously mentioned award recipients are now the proud owners of this next award as well....

The "I Less Than Three Your Blog" Award (<3)
Do you know it took me forever to figure out that was a sideways heart? (I mean, before Lisa @ Brass and Ivory presented the explanatory award).

But! Added to the above list of recipients, I'm going to add Danielle of My Little Corner... since it's nice to have something to give a person who gave you an award out of the blue, and I really do Less Than 3 your blog, Danielle! <3 that all this back patting is through and we have sufficiently intermingled the art world with the MS world for a's back to the regularly scheduled tidbits about being a labrat from here on out since I know that's what most of you have come to expect.

Thanks for playing!

Until next time ~ May you be relapse-free or at least having a good day!

I won a prize!

I got a "you made my day" award from another blogger, my friend Danielle! Check out her altered art if you get a minute. She's quite the artist!

So, without further ado (as if I had given you any ado to begin with) here's my Award...

Pretty, eh? I like it! Here's the post that came with it...

The rules for the "You Make My Day" award are to re-present it to 10 people whose blogs bring you happiness, inspiration and make you feel happy about blog land. Let them know through e-mail or by posting a comment on their blog so they can pass it on. Beware you may get the award several times, and if you do, consider yourself really, really loved. So to pass it on and keep the love going ~ here are 10 of the 100's of blogs that keep me inspired and bring a smile to my face. Please check them out when you have a few minutes...perhaps there are some new friends to be made!

Here are my 10 in random order:

My Little Corner... (back at ya, Danielle!)
Suthrnjewl's Recipes

Friday, March 7, 2008

Bottoms Up!

When is eating your fungus that springs from dead insect carcasses (Fingolimod) not so bad? When you compare it to drinking a smoothie made with worm larvae. (eeeee-uck!)

Can drinking worm eggs treat MS?

Some UW Hospital patients will soon test an unusual treatment: They'll drink a cocktail of worm eggs, which will hatch inside their bodies.

Doctors say the low-grade infection of worms, harvested from pigs, can help regulate faulty immune systems. The patients have multiple sclerosis, in which the immune system attacks nerve cells.

"The yuck factor is hard to get over," acknowledged Dr. John Fleming, the UW Hospital neurologist who plans to launch a study of worm therapy next month. "But the idea has scientific merit."

Full Article Here

Somehow I'm really overjoyed to be taking a little brown capsule filled with powder rather than downing that concoction. Being the hypochondriac with an overactive imagination that I am, I would lay in bed at night just knowing that I could feel those little buggers wiggling around inside me. eeeeeeew!

Thank you to all participants brave enough to be involved. You willingness to eat live worms trumps my willingness to eat dead fungus. I bow down before you.

Benign MS - A Misleading Term

Like a cancer, Multiple Sclerosis can be sometimes categorized as "benign". It doesn't mean it won't hurt you or really that it's any different from "regular" MS. It's misleading, in my opinion, to call any form of MS benign unless a person had one or two exacerbations and then it stopped altogether for the majority of their lifespan. Like the people who are autopsied and found to have had MS but nobody ever knew it and they never showed any symptoms.

Benign MS is not something that can be diagnosed up front. You can't go to the neurologist because you've been so dizzy you thought you were on an old Batman TV set, and have him tell you "You have Multiple Sclerosis, but it's the benign type and you will not suffer any major neurological damage for years."

It's diagnosed, rather, in retrospect. I feel I've had MS for an eternity (and to my 9-year-old son, it has been forever since I was diagnosed when he was 6 months old). Nine years isn't long enough to judge whether my MS is benign or not, however.

The clinical definition of Benign MS is "10 years since diagnosis and an EDSS score of less than or equal to 3". It does not mean one doesn't end up in the hospital taking steroids for days at a time, or that you don't occasionally have to wear depends, or be confined to a wheelchair, or have vision or speech problems. What it does mean is that, despite the attacks, your body is able to repair the damage and rebound from these attacks to assume a normal or close to normal level of neurological function.


Perhaps this ancient symbol should represent Benign MS. The Ourobouros Sun seen here is the ultimate ancient symbol of power that eternally consumes and renews itself... kind of like MS with myelin.

Image Credit: Quetzelcoatl sun t-shirt design - based on the Aztec ourobouros. Original t-shirt design by Primal Future Media.


That is so misleading and MS is so unpredictable that I am scared to allow myself the luxury of even considering adding "benign" as a prefix to my MS. It can change at any moment. I could have a whopper of an attack and sit in my electric wheel chair that I have "just in case" and never get back up again. Not that there's anything wrong with that... It's just silly to even have the category of "benign" for MS. Until I die, there's no point in assessing it one way or another, right? And once I do, I'm not really going to be pondering the question any more.

I mean, if it's more accurate to assess these things in retrospect, one shouldn't really jump the gun and describe the course of my disease until it's done having it's way with me, right?

So, in conclusion, in order to give my readers a definitive answer about the type of MS I have, I should wait until the 10th anniversary and see what my EDSS score is and than kill myself so there's a definite end to the entire process. (Don't worry, Mom, I'm being sarcastic here). Otherwise, at year 11 or year 15 or year 29, I may just have a smack-me-down-good relapse from which I cannot get up, and that would blow the whole "benign" theory right out the window.

In my opinion, there's nothing "benign" about this horrid disease and it's all one big crap shoot as to what it ends up doing to you.

Hopefully, there are researchers out there somewhere who are interested in learning how the myelin can take a major hit and the body can repair it to near perfection in persons who have "benign" MS. If the pharmaceutical companies can't replicate it, tho, it probably won't be looked at. So the money making cogs of the MS wheel turn.

Until next time ~ may you be flare free or at least be having a good day.

MS Awareness, Blogging Friends, and a little Link Love

This was originally posted on Brass and Ivory thanks to Lisa. She's an amazing woman who has taken great care and a lot of time to compile this post and all the links within.

After noting my place in the list...I think maybe I better step it up a little and think of something to talk about. :-)

I'm off to go visit 3 blogs I've not seen before and make my comments. Thanks for a wonderful project, Lisa!

There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects….wait… I mean lovely blogger friends who happen to have multiple sclerosis.Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I’d like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.Here’s what you do:

  1. Copy the entirety of this post

  2. Create a new post and paste this content

  3. Visit 3 of the blogs listed below which you were unfamiliar

  4. Leave a comment on their blog encouraging them to participate

  5. Please add Brass and Ivory to your sidebar, if it’s not already

New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

Names of the Blogs - Name of Blogger (if known)

and # of posts in 2008 (as of 3/5)

9 Brand New MS Bloggers joined the blogosphere in 2008!!
New! Carole’s MS Blog (Carole) 49
New! Great Mastications (Orla) 37
New! Movin’ On with MS (Sammie) 26
New! Me, Myself and MS (Emma) 10
New! Being Ammey 8
New! Blogbuster (Daniel) 6
New! Etsy Crest (Shelby) 6
New! Serina’s Blog 5
New! I’m Beating MS (Michael) 2

Most Prolific MS Blogger - so far in 2008!!
Jim’s Deep Thoughts (Jim) 231

Top 10 Rather Prolific MS Bloggers - so far in 2008!!
A Stellarlife (Diane) 109
Multiple Synchronicities & Sclerosis (Merelyme) 90
Friday’s Child 70
My Journey - Living Well with MS (Diana) 69
Sunshine and Moonlight (Kim) 65
The MonSter Ate My Branes! (Natalie) 65
Queen Mediocretia of Suburbia 60
Brass and Ivory (Lisa) 56
Brain Cheese (Linda) 52
Maybe I’m Just Lazy (Julie) 51

28 Moderately Prolific MS Bloggers - so far in 2008!!
Maggsbunny (Maggie) 48
Living with Multiple Sclerosis (TC) 47
MS My Way 43
Bugs, Bikes, Brains (Shauna) 39
Dancing with MS (Lazscott) 37
Trying to Catch My Breath 37
A Florida Journal (SwampAngel) 35
Now We Are Six (Tish) 33
Reality Check (Michael) 32
Access Denied (Herrad) 31
Multiple Sclerosis Blog 30
MS Activist (NMSS) 29
Self-injecting Chinese Hamsters since 2007 27
Shirl’s the Girl (Shirley) 27
Disabled Not Dead (Anne) 26
Life with MS (Trevis) 26
Living with MS (Blinders Off) 25
White Lightning Axiom - Redux (mdm) 25
Stevers! 23
Word Salads (Have Myelin?) 23
Danieldoo (Vivian) 22
Caregivingly Yours (Patrick) 20
Deo Volente (Lisa N) 20
Down the MS Path (Vicki) 19
Do You Have That in My Size? (Denise) 17
Jenn’s Nook (Jenn) 17
Fingolimod and Me (Jeri) 16
Human Life Matters (Mark) 16

51 Mildly Prolific MS Bloggers - so far in 2008!!
A Life of Learning with MS 15
Behind Blue Eyes (Zee) 15
Katy and Mike’s Adventure (Katy) 15
Living Life as a Snowflake (Sharon) 15
Mandatory Rest Period (Kim) 15
MS Maze (Mandy) 15
My Journey with MS (Christina) 15
The Multiple Sclerosis Companion (Pat) 15
‘Tis Herself (Kell) 15
A Short in the Cord (Joan) 14
Blindbeard’s MS Blog 14
Bubbie’s Blog (Cathy) 14
One Crazy Chick (Chris) 14
Pat’s Pond (Pat) 14
Rants and Musings (Cutter) 14
G and K’s Mom 13
MS Toolkit 13
Newly Diagnosed with MS (Andrea) 13
One Life (Stephen) 13
MS Not Just a Diary (Doug) 12
Rayne’s World (Jayme) 12
Chaos Personified 11
My MS Journal (Jaime) 11
Purely Patsy (14 yr old Patsy) 11
Victoria Plum - Technician! (Victoria) 11

26 Less Prolific MS Bloggers - so far in 2008!!
Broken Clay (Katja) 10
Mark Pickup (Mark) 10
My Chain Driven Ride through Life in Alaska (Michelle) 10
Deborah Does Navel-Gazing (Deb) 9
Funky Mango’s Musings 9
Inside the Mind of a Squirrel 9
Living Well with MS (Michon) 9
No Time for MS (Courtney) 9
Sorting It All Out (Michael) 9
Travels With Lucy (Virginia) 9
MS Caregivers 8
Can You Hear Me Now? (Donna) 7
Irreverence is Justified 7
Multiple Sclerosis Notes 7
My Tysabri Diary (Lauren) 7
Chris Has MS (Chris) 6
Diary of MS X (7 Divas) 5
Electrical Disturbance (Stephan) 5
Know Multiple Sclerosis 5
MS in the OC (Frank) 5
MS News and Notes (Deb) 5
MS Recovery Diet Blog (Ann) 5
The Endomorph (Ruth) 5
The Jaws of My Life (Jaws) 5
Time to Deal with MS (Homer) 5
YodaMamma MS & More 5

38 Barely Prolific MS Bloggers - so far in 2008!!
Carolyne’s MS Odyssey (Carolyne) 4
Defeating Illness (Chris) 4
Intent, Context, Perception (Chris) 4
Libbi’s MS Journey (Libbi) 4
MS Recovery Diet Blog (Judi) 4
My Autoimmune Life 4
The Life & Times of Sancho Knotwise (JM) 4
The Zen Pretzel Trick (Zen Angel) 4
When it’s Raining… (Keeley) 4
Kebenaran - The Truth 3
Montana Homecoming (Sister Jane) 3
Ms Quill 3
Reality Chick (Keli) 3
Catch My Disease (Lisle) 2
Clods and Pebbles 2
Dissonance 2
Georgia MS Advocates 2
Lazy Dog Public House 2
Looking Forward with MS (Pamela) 2
Surviving MS in Alaska (Michelle) 2
These Pretzels Are Making Me Thirsty (Trrish) 2
Troy’s Multiple Sclerosis Experience 2
You Me and MS (Judi) 2
Camille’s MSadventures 1
Comment Column (Virginia) 1
Erik’s MS & Lyme Blog 1
Hop Bloody Hop (Philip) 1
Jenn’s Journey with MS (Jenn) 1
Living with MS (Cyndee) 1
Mismorphic’s World of MS 1
MS Musings 1
MS Real Life Stories & Issues (Kristin) 1
Postcards of My Life (Sherry) 1
Rebooting Times 1
Shoester (Doug) 1
The BS of My MS (Heather) 1
The Perseverant Pincushion (Trish) 1
Tysabri Help (Deej) 1

Having too many items from various posters to count:
LJ Users with Multiple Sclerosis

And finally - 26 MS Bloggers who have been silent in 2008!!
Angst on a Shoestring (Gina)
Dandelion Wine (Lynx)
Doug’s MS Journal (Doug)
Imagine Bliss Butterfly (Suzy)
It’s Not All in My Head (Optimist)
Just Above the Abyss (Heidi)
Life with MS , seeking a cure (Karyl)
Managing MS with Tai Chi (Joel)
Managing Multiple Sclerosis
Michele’s Blog
Mike’s Place
MS - My Scene (Virginia)
My Complications (Amanda)
My Demyelination (Tina)
My MS Experience
Object of My Injection (Michelle)
Say It Isn’t So (Mouse)
Talk Story with Kimberly
The Great NetXperiment
To Be Continued… (Jaime)
Truth and Beauty (Baraka)
Tryin’ to Imagine Bliss (Suzy)
What is MS to Me (Dave)
Willy’s MS Rants
Wind Among the Reeds

Hard to categorize:
I Have MS (Tim)
Huggins’ MS Pages (James)
MS - A Personal Account
MS Protocols (Jeff)
MSB’s Podcast
MSing Around
Multiple Sclerosis Blog and News
Multiple Sclerosis Sucks
OUCH! It’s a Disability Thing
Squiffy’s House of Fun

Thank you for helping to build a stronger MS Community.

Tuesday, March 4, 2008

I learned something new today!

I got the phone call from the nurse at Shands Jacksonville today in response to that email I had sent my doc. I told her about my hand being numb for 3 days and the increased spasticity in my legs for those same days.

She asked me if I had a cold or any type of infection preceding that 3 day period. I thought back. I remembered that I pretty much have an ongoing UTI since my bladder doesn't empty well and I am slacking about drinking enough water.

I told her that while I was feeling lousy from the increased symptoms I was also trying to drink more water and take cranberry supplements to get the UTI under control.

It was kind of an "aha!" moment for both of us. She said they have to document any increase in opportunistic infections (such as upper respiratory infections and UTI, etc.) because the MS drugs, since they suppress the immune system to one degree or another, have a tendency to allow these infections to slip through past the immune sentries.

I asked if what I had was an exacerbation then. (Which was my original question) She explained to me that for those three days, while my immune system was sending out the infantry to fight the UTI, some of the army was misdirected and went chewing on my myelin instead. Therefor it was a "pseudo" exacerbation. Real in it's effects, but not instigated by the MS process to begin with.

So this is why it's so important to treat any type of it doesn't make the MS sit up and say "hey! we want to play, too!!"

UTIs apparently are lumped in the same group as the head colds when it comes to things Fingolimod (or Avonex) will allow to happen to you to a more pronounced degree.

Lucky me.

I get to go see the doc on Thursday for my scheduled 6 month trial checkup, so if I am further enlightened, I'll spread the knowledge then.

I always thought a pseudo exacerbation happened when you got over heated or too tired and the nerve paths that were already damaged were just not functioning right. With rest or a cooling off period, things returned to normal. I didn't realize it could be actual disease activity.

I'm thrilled to learn something new about MS -- especially during MS Awareness Week/Month. How very appropriate.

Sunday, March 2, 2008

What is a relapse?

I have Relapsing Remitting Multiple Sclerosis which is defined by the National Multiple Sclerosis Society as:

* Relapsing-Remitting
Characteristics: People with this type of MS experience clearly defined flare-ups (also called relapses, attacks, or exacerbations). These are episodes of acute worsening of neurologic function. They are followed by partial or complete recovery periods (remissions) free of disease progression.
Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%.

I have never, since the beginning of my relationship with this disease, questioned whether or not I was having a relapse. I always KNEW. There could be no denying it. From the very first time, when I went numb from feet to waist, up until the last attack back in May of '07 when I suffered bladder and bowel symptoms along with numbness in my left leg and torso. There has never been a question of "is this MS?"

But now, since I have been on this Fingolimod trial, I am wondering more and more about just how mild a relapse could be and whether or not I could recognize it.



Initially, about two thirds of people have relapsing/remitting MS. They experience relapses on average once or twice per year, with good or complete remission in between. However, there is a tendency for symptoms to worsen very gradually over time.

relapsing/remitting MS - relapses once or several times a year with good or complete remission. Tendencey for symptoms to worsen over time.

A relapse is a significant worsening or a re-occurrence of a symptom, or a group of symptoms, lasting for more than 24 hours. Relapses are also referred to as exacerbations, episodes and attacks. Symptoms usually appear over a short period of time (hours or days), but can last for anywhere between a few days to many months. The severity of a relapse can also vary from mild to more severe.

A remission is a period of recovery, when symptoms become less severe or disappear altogether. Periods of remission can last any length of time, sometimes even for years.

So, now the question is, could the numbness and pins-and-needles I had in my left hand for 3 days, that left as quickly as it came, be categorized as a relapse? I'd like to know because I want to believe this medication is keeping me relapse-free and if this is an actual relapse, then perhaps I need to report it.

As much as I want to think Fingolimod will protect me from ever having to deal with MS again, I'm not really living in that bubble. I know there is no cure, no magic bullet, and that I will have to suffer through more relapses and probably even move on to Secondary Progressive MS where there are no remissions. It would just be really nice to think that if that was a relapse, then WOW! it's not so bad. I've definitely seen worse.

I emailed my doc to get his opinion on whether or not that could have been a relapse. We'll see what his thoughts are.

Every time I have seen the definition of a relapse say "lasting anywhere from 24 hours to weeks or months" I would laugh. "24 hours! Yeah, right." It takes me over 24 hours to really work up a good new symptom. With my first attack, for the first 24 hours, my left foot went numb. Over a period of 2 weeks that progressed to include both feet, both legs and the lower half of my torso, with weakness progressing to the point of feeling like I was wading through mud. Now THAT'S a relapse. It usually takes me three months just to recover from one of those attacks.

So, for all you MSers out there, here's my question:

What has been your mildest relapse to date?

Did you see a doctor for it?

Any replies are greatly appreciated as I try to sort this all out.

I'll start a poll too, so we can see what the average duration of a relapse is for all you RRMSers.

Until next time, may you be symptom free or at least have only "good" days.