Welcome

Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
my blog

Monday, April 18, 2011

new Rx?

Scripps closer to multiple sclerosis knockout



Published on April 18, 2011 by admin · No Comments

By Jeff Ostrowski

Palm Beach Post Staff Writer



JUPITER — Researchers at Scripps Florida say they’ve found a way to stop multiple sclerosis in mice.

In a study published this week in the journal Nature, Scripps scientists say they’ve developed a compound that stops MS by knocking out TH17, a type of white blood cell that malfunctions in patients with MS and other autoimmune diseases such as rheumatoid arthritis and lupus.

If it works in humans, the new treatment, known as SR1001, would have a couple of advantages over existing MS drugs, said Tom Burris, a professor in the Department of Molecular Therapeutics at Scripps Florida.

First, it could be taken as a pill rather than injected. Second, the compound would attack only TH17 cells while sparing other disease-killing cells.“Right now, the treatments that are out there suppress the entire immune system, and that comes with a lot of side effects,” Burris said.

It’s unclear whether the treatment is a cure or simply stalls the disease, he said.

An estimated 400,000 Americans have MS, according to the Multiple Sclerosis Foundation in Fort Lauderdale. MS, which prevents nerve cells in the brain and spine from communicating, is most commonly diagnosed in women between 20 and 40.
“The hunt for a new MS drug is very urgent,” said Kasey Minnis, director of operations at the Multiple Sclerosis Foundation. “There’s no medication that’s super-effective in all people with MS.”

The new treatment is promising enough that it has garnered interest from drug companies, Burris said.“We have a lot of interest from biotech and pharma companies, and we’re trying to strike a deal with someone,” he said.

Scripps could license SR1001 to one of those companies within a few months, Burris said.

TH17 cells produce interleukin-17, a natural molecule that can cause inflammation.

“In these autoimmune diseases, the body is tricked into attacking itself,” Burris said.

When scientists blocked signals from the TH17 cells in mice, their MS disappeared.

Dr. Daniel Kantor, an MS specialist in Ponte Vedra Beach, said the treatment could work, but he also urged caution. MS is so much easier to treat in mice than in humans, he said, that researchers sometimes joke that rattling the cage will cure the disease in laboratory animals.

“Even if it’s really going to work in the end, it will take years before it’s used in humans,” Kantor said. “Animal data is different from human data. Until you have large human studies, you never know.”

Scripps’ work was supported by National Institutes of Health grants totaling $3.6 million.

 
Article source: http://www.palmbeachpost.com/money/scripps-closer-to-multiple-sclerosis-knockout-1408926.html?cxtype=rss_money_16350







Saturday, April 16, 2011

funk

So this post was supposed to be an uplifting blog about my life with MS.  I find myself in the midst of a funk and am having a very hard time lifting myself up let alone anyone else.
It's been a little over a week that my symptoms started to come back with a vengeance.  I am frustrated. I am angry.  I don't like this feeling I have right now.  I feel so alone in this.  My husband tries to understand but in many small comments (unintentional) I know he doesn't.  I have a feeling latelty that there is no hope.  No one to help me.  I feel isolated in my home sometimes.  I hate this disease and I am learning to hate who I am.  I hope this feeling will pass soon. 

I keep lifting up my problem to God, but maybe I don't know how to let go.  I have pain in my heart and pain in my body.  I am tired of watching life pass me by and not being able to participate.  Sometimes I think..........well it's not what I want to think.
I need some help.  I don't know who or what or where.  Pray.

Friday, April 8, 2011

invisible symptoms

Invisible Symptoms in MS - Part 1


http://bit.ly/MSLOinvisiblesymptoms


Invisible Symptoms in MS - Part 2


http://bit.ly/MSLOinvisiblesymptoms2


I think that this is one of the hardest things about having MS.  People will tell you that you look great, but the truth of the matter is that physically you are struggling.  I get told all the time that I look better or something along the line, when I am so fatigued, hurting, my mind is a jumble, daily tasks look like an enormous mountain to climb.  There are days when I almost feel as good as I look, but inevidely, the invisible symptoms sneak back.  Today they came back. 

Sunday, March 20, 2011

Second thought

When I was younger I took so much for granted.  I was always one of those who walked super fast everywhere I went never once thinking that it would come to an end. I drove my car to wherever even if it was in walking distance.  I didn't think twice about my ability to run, ride a bike or dance.  In my mind, I didn't even know that I took these things for granted.  Never giving it a second thought.
Throughout my nursing career I have taken care of many people who lost some of their natural abilities.  I always felt sorry for them, but never truly understood the emotional toll that they were or went through.  I took good care of them for my 12 hours, empathized or so I thought, with their situation, but at the end of the day, I got to walk out of that building on my own to feet.
I guess what I am trying to say is walk, run, skip, jump, hop, twist and shout like there is no tomorrow.  Go swimming, skiing, hiking, ride your bike, and enjoy the outdoors, it is a wonderful gift to be able to move your body. Do the cotton-eyed joe, the electric slide, the cha cha slide, the chicken dance, and of course we can't forget the Macarena.

http://www.youtube.com/watch?v=bmKhEGiNshA


Monday, March 14, 2011

National MS week

This is national MS week, where MS will be in the forefront for a few days.  Then next week everyone will have moved on to something else. Not me.  MS is with me all the time.  I can never escape it.  My days are filled with it.  I can't even try to forget. 

 Daily reminders around every corner when I try to forget.  I can't stand on my tip-toes to reach something on the top shelf with out losing my balance.  I can't walk very far with out using a cane.  IF I forget my cane, my speed is about a turtles pace and my walk is like that of a toddlers (swaying side to side).  Someday's my body fools me, for whatever reason, I can do a little bit more.  But no worries, because in a few days it plays a cruel joke and I am back to toddler hood.

Today I am tired.  I am visiting my family and went into the mountains for a litte bit.  Lasted a couple hours.  It's so nice to be out of the house like a real person.  Now, however, I am paying for it.  I am utterly exhausted.  Feel like my energy reserve has been used for the next month.

Trying to be full of optimism, but just not feeling that today.  If it weren't for my family, I probably would be more housebound than not.  No fun.  I really hate not having my independence.  I always wonder when my husband will be tired of having to help me out so much. 

I hate how my body betrays me.  I hate the look that good old steroids gave me.  My doctor tells me to excercise to lose the weight.   I try.  Then I succeed.  Then I get knocked back down.  It's really hard to keep getting up just to be knocked back down.  At what point do you just stop getting up.  I hope never, but every once in a while I feel like it would be easier to stay down.

I would like to acknowledge that in this great big world of ours that mY MS is a small problem.  I would like to pray for those victims on this past weeks hurricances and tsunamis.  May God bless those who are in need.  I pray that he comforts those who have suffered losses and gives strength to those who are suffering.  I pray that He opens the hearts and minds of all around the world and touches their spirit to offer support whether it be financially, by volunteering or by lifting their hearts up in prayer.




God Is Our Hope

 
God is our hope and strength,  a very present help in trouble.
Therefore will we not fear, though the earth be moved,
and though the hills be carried into the midst of the sea;
Though the waters thereof rage and swell,
and though the mountains shake at the tempest of the same.
There is a river, the streams whereof make glad the city of God,
the holy place of the tabernacle of the Most High.

-- Book of Common Prayer 1979