Tuesday, January 30, 2007

No Needles for Women with MS!

A member of my MS Group on myspace.com sent this around. It's very interesting (The link is to his blog):

"A new clinical trial, which is seeking participants, may help women with MS get rid of the needles"

A new clinical trial, which is seeking participants, may help women with MS get rid of the needles.

Researchers hope an estrogen called estriol will help women with relapsing-remitting multiple sclerosis.

It marks the first large-scale trial of a sex hormone to treat the disease, according to the National MS Society.


"Pregnancy makes a variety of autoimmune diseases get better," said Dr. Rhonda Voskuhl, who is heading the study at UCLA.

One of the diseases it helps is multiple sclerosis, a disease that attacks the central nervous system. In MS, the myelin sheath around nerves which helps conduct electrical impulse is lost in multiple areas and replaced with scar tissue.

Voskuhl and a team at UCLA, as well as six other universities around the country, will start enrollment at the end of February for a two-year clinical trial of estriol with about 130 nonpregnant women with MS.

About four years ago, Voskuhl did a small-scale study of estriol with 12 women who had MS.

"We saw an improvement in cognitive functions," she said.

The study also saw an 80 percent reduction in inflamed regions in the brain.

Voskuhl hopes the new estriol study will yield positive results of protecting the nerves and reducing lapses, and not just act to help inflammations.

Estriol is taken in pill form, which would ultimately be cheaper than current treatments. Voskuhl said injection treatments can cost a patient anywhere from $12,000 to $20,000 each year.

Throughout the study, women will take a daily shot of the anti-inflammatory drug Copaxone as well as an estriol pill or a placebo.

"Nobody gets less than the standard of care," Voskuhl said.

The significance of gender differences in diseases such as MS, rheumatoid arthritis and lupus, which affect women three times more frequently than men and often improve during late pregnancy, was long-known but mostly overlooked.

Voskuhl, a graduate of Vanderbilt University School of Medicine and former senior investigator at the National Institute of Neurological Disorders and Stroke, suspected that the sex and pregnancy clues "must be a hint into how these diseases work."


She zeroed in on two hormones produced in abundance during late pregnancy, progesterone and estriol. Mice developed as models for human autoimmune conditions were exposed to the hormones at blood levels close to what would be circulating during the third trimester.

"Progesterone didn't do much," she reports. "But there was a huge disease amelioration when we gave them estriol."

The hormone seems to rein in peripheral blood cells that produce inflammatory reactions. So convincing were her results that the Food and Drug Administration gave her a green light for a six-month pilot study of estriol in women with MS

Enrollment for the study is slated to begin in late February at.......[GO TO MY BLOG FOR FULL STORY AND LINKS]

Sunday, January 28, 2007

Video

Check it out:

http://video.msn.com/v/us/msnbc.htm?g=ddf35765-e1ef-42a6-86f7-40a045a44066&f=00&fg=email

MSNBC Today Show did a special interview of an author who has MS. The clip is called Americans Living With Cronic Illness.

Wednesday, January 24, 2007

Update

Hey, not much. I think the flare up is dying down (I hope). My hands and feet are still being affected, as is my balance.
Yesterday was bad and it seemed like i was overmedicated, though I wasn't. I felt so sick just sitting there I thought I'd fall out of my chair. But then I had lunch and felt a little better, enough to stay the rest of the day, though I didn't feel good enough to be driving. I think it's all due to the sinus infection my body is currently fighting as well. I'm just starting to get over it, but caughing when I lay down still. Don't worry I'm staying well medicated at night. Unfortunately that means Chris has had to take care of the midnight puppy outings. Sorry, Chris.
But he's been a dear about it, and like I said, I think I'm getting better. To recap:
Hands & feet and legs are still numb
dizziness & balance problems
Sinus throat caugh & drainage
But it's all getting better. :)

Tuesday, January 23, 2007

avonex

Dear AVONEX user,

Your life with the #1 prescribed MS therapy—AVONEX (Interferon beta-1a)—has just been made a little easier thanks
to a new luer lock syringe. AVONEX luer lock Prefilled Syringes are designed to give you added protection. Now you
can feel even more confident about taking the #1 prescribed MS therapy in the world.

AVONEX luer lock Prefilled Syringes have a yellow sticker on the outside of the packaging that reads,
“NEW SYRINGE AND PATIENT STORAGE CONDITIONS.”

Please take a moment to review the information below.





The old luer slip has been replaced on all AVONEX Prefilled Syringes with a new
luer lock. The new luer lock secures the syringe to the needle for added protection.

Please see below for instructions on how to use the new luer lock. For complete
instructions on how to prepare and inject AVONEX, see the patient
Medication Guide at www.AVONEX.com.



Hold the AVONEX Prefilled
Syringe upright, with the
cap pointing up. Remove
the cap by bending it at a
90° angle until it snaps off.


Open the package with the
needle. Attach the needle by
pressing it onto the syringe.
Be careful not to push the
plunger while attaching
the needle.
Turn the needle clockwise until
it locks in place. If the needle is
not firmly attached to the syringe,
it may leak and you may not get
your full dose of AVONEX.

PLEASE SEE THE AVONEX PATIENT MEDICATION GUIDE FOR COMPLETE INSTRUCTIONS.

Monday, January 22, 2007

Avonex Update


Avonex has started packaging a new needle!


Actually the only thing new about this version is that it has a new twist locking mechanism. The old luer slip has been replaced on all AVONEX Prefilled Syringes with a new
luer lock. The new luer lock secures the syringe to the needle for added protection.

Please see below for instructions on how to use the new luer lock. For complete
instructions on how to prepare and inject AVONEX, see the patient
Medication Guide at www.AVONEX.com.


They have been doing wonderful stuff in reply to people's complaints, like the smaller needles. I know you guys aren't affected by it, but I just thought I'd share because it's kind of exciting to me to know that I won't screw up and let the needle come off when I stick it in.

Wednesday, January 10, 2007

Give me a hand

Alright, the flair up is officially on a role!
Don't worry, I've called Dr. E and left a message. He's calling me back soon.
I'm dizzy and falling into walls today, more so than usual. That's not the big part: My hand (right hand) is quickly going stiff-numb. and my left hand, pinky and first diget on ring, is soon following.
I'm scared that he'll recommend the IV again. I know it sounds trite but... just give me a pill to fix it.
I'm sure this is the hump before I'm over the hill, because my eye actually got quite better after I took a nap yesterday. I think I just need some proper sleep... which is kind of hard with the puppy, and I can't expect Chris to do more than what he's already been doing for me.
It's just going to take time to adjust to the new schedule for all of us and all our parts.
I'm sure I'll be better by the end of next week... one way or another

Tuesday, January 09, 2007

Do you see what Eye see?

I've already had a bout of optic neuritis when I was first being diagnosed with ms, and this is definetly a different type of pain. My eye feels like it has an eyelash in it, but it doesnt... but the vision loss is similar to my first day.
I noticed this pain earlier today, after lunch... maybe something flew in it while I was walking the pups.
Love you guys.

Take your vitamins!

Vitamin D May Lower Risk of Multiple Sclerosis in Whites
Those with highest levels of sunshine vitamin have lower rates of MS, finds study

WEDNESDAY, Dec. 20 (HealthDay News) -- Could getting some extra sunshine help prevent the development of multiple sclerosis?

Maybe, according to new research that found white people with high circulating levels of vitamin D -- a vitamin mainly produced by the body after sun exposure -- had a lower risk of developing multiple sclerosis (MS). No such association was found for blacks or Hispanics in this study, which is published in the Dec. 20 issue of the Journal of the American Medical Association .

"The group [of whites] with the highest vitamin D levels had a 62 percent decreased risk compared to the group with the lowest levels," said the study's lead author, Dr. Alberto Ascherio, an associate professor of nutrition and epidemiology at the Harvard School of Public Health in Boston.

However, Ascherio cautioned that it was too soon to recommend that anyone -- even those at high risk of developing MS -- start taking vitamin D supplements or increasing their sun exposure with the hope of preventing MS.

Multiple sclerosis is a disease of the central nervous system. It's believed to be an autoimmune disease that causes the body's immune system to attack the substance -- myelin -- that covers nerve cells. About 400,000 Americans have MS, according to the National Multiple Sclerosis Society.

Symptoms of the disorder include poor coordination, loss of balance, blurred vision, fatigue, cognitive problems, numbness and possible paralysis.

Using blood samples stored among a repository of more than 7 million samples maintained by the U.S. Department of Defense, the researchers compared blood samples of 257 people with multiple sclerosis to 514 age, sex and race-matched control samples.

One hundred forty eight of the samples were from whites; 77 were from blacks, and 32 were from Hispanic adults.

The researchers analyzed the blood samples for levels of circulating vitamin D and separated the samples into five groups based on the vitamin D levels.

They found that the group with the highest levels had a 62 percent decreased risk of MS compared to the group with the lowest.

However, these differences only held true for white people. There was no association for blacks and Hispanics. The researchers theorized that may be either because the sample sizes were much smaller than they were for whites or because blacks and Hispanics have lower levels of circulating vitamin D.

Ascherio said the researchers don't know for sure whether vitamin D may play a role in causing MS, but they suspect that it probably does.

"There is a pretty good convergence of evidence that vitamin D affects the immune system to lower the risk of MS," he said, adding that if that is the case, "the potential for prevention is enormous."

"This is another piece of the puzzle, and it may help to explain why we see geographic difference in MS," said Dr. Nicholas LaRocca, associate vice president of health care delivery and policy research at the National Multiple Sclerosis Society.

But what this association means -- "is it an actual risk factor; how does it work; what can we do about it?" -- is open to question, he added.

"In the future, if one could establish a causal relationship, it could present an opportunity for a partially preventive strategy. Right now, the scientific community is not convinced that there's enough evidence to recommend taking vitamin D supplements, though," LaRocca said.

HealthDay

Saturday, January 06, 2007

My New Baby!

Friday, January 05, 2007

Shakes

For the past couple of nights I've noticed I've been tense and twitching... a lot. Also My insides (in the torso/chest) feel like they're shaking at a very fast speed.
I'm a bit dehydrated, and need more fiber. I'm very tired, and have been most of the day, but I don't want to take another provigil for a while. Shot night tonight... but I'm calmer than I have been. We shall see if I wake early tomorrow or sleep through the day.

Shakes

For the past couple of nights I've noticed I've been tense and twitching... a lot. Also My insides (in the torso/chest) feel like they're shaking at a very fast speed.
I'm a bit dehydrated, and need more fiber. I'm very tired, and have been most of the day, but I don't want to take another provigil for a while. Shot night tonight... but I'm calmer than I have been. We shall see if I wake early tomorrow or sleep through the day.

Shakes

For the past couple of nights I've noticed I've been tense and twitching... a lot. Also My insides (in the torso/chest) feel like they're shaking at a very fast speed.
I'm a bit dehydrated, and need more fiber. I'm very tired, and have been most of the day, but I don't want to take another provigil for a while. Shot night tonight... but I'm calmer than I have been. We shall see if I wake early tomorrow or sleep through the day.

Thursday, January 04, 2007

Minor Flaire Up

Today I had a minor flair up... I guess I should say Last Night. When I went to bed I noticed my right big toe was numb, in the way that I can't even tell that I have it other than the resistance the rest of my foot got when I pushed it against the wall. Through the night I noticed more and more parts that were numb in the tingly way (not the "not there" way, on most of them). Up the back of my legs, mainly the right, my midsection, and up my spine (which slightly spreads across my back). It's nothing big, DO NOT WORRY! Just updating you and keeping it journaled somewhere so I don't forget.
It kept me home today, and I definetly needed the rest.
I'm trying to think of what I did the day before that might have caused it. I had a Diet Dr Pepper, instead of regular, and couldn't get through it.. the nutrisweet was too much for me. And I had that provigil that made my heart pound so fast... could be a combination of the both... it did make things weird.
Anyway, my feet are numb, and things will get better. I'm resting out the day. and going to bed for the night. Things should be good enough in the morning so that I can go to work... even if it's just for one day, which will be good, cause then if it's hard, I can rest the next day (saturday).

Wednesday, January 03, 2007

Provigil

Oh my, I shouldn't take a full one. I've gotten dizzy today and feel like I'm overdosing on it... like too much caugh syrup or something. That crazy, dizzy, tremor, and light feeling but instead of in my head, it's all over. Oye. It'll be better after I sleep it off, IF I can sleep.