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.