CYNDEE, FAMILY, AND LIVING WITH MS

SEPTEMBER 2008

2008-09-09T19:34:00.000-07:00

HI EVERYONE!!!

I'm still on Tysabri and doing so well, I guess I forgot about my blog until someone just asked.

Tysabri has made my life so much better. It still only lasts about 14 days and then the good starts going away and the ms starts rearing it's ugly head. But, I love those 14 days!!!

JANUARY TYSABRI

2008-02-05T09:09:00.001-08:00

On January 24, 2008 I had my infusion. It took me two weeks before that to fight with insurance and pharmacy, but I did it! While having my infusion I sat with a MS friend that was having his first infusion and all went well. I remember my first infusion and I was so scared! It was nice to be with him.
It has been 12 days now since that infusion and I can feel the Tysabri wearing off. This has happened since I started, so I'm not surprised. I don't think about it, and then when I start feeling different, I count back the days since the infusion and it is usually 10-12 days. Oh, well, how can I complain right?!! There are still so many people not on Tysabri and they don't get those days. But, I'm a fighter and MS with NOT GET ME DOWN!!!

MERRY CHRISTMAS AND HAPPY NEW YEAR

2007-12-21T17:07:00.000-08:00

This is a picture of me, my Husband, and our 5 Grandchildren. I am SO BLESSED to have my Family!

I had my Tysabri infusion on 12/20/07, and feel so much better! About 1 week before my infusion date I am so tired, and other MS stuff! I shopped all day today, and baked cookies! YEAH TYSABRI!

I wish you all a Merry Christmas and Happy New Year! I know that all of us lucky people who are on Tysabri will have a great 2008!!

HAPPY THANKSGIVING

2007-12-02T12:51:00.000-08:00

Happy Thanksgiving!!

I had my Tysabri Infusion on November 21, 2007. All went well. The wonderful energy, and other side effects only lastest 8 days this time. But, I should be happy with those 8 days of feeling "Normal"
shouldn't I?!! I am so THANKFUL FOR TYSABRI!!!

HAPPY HALLOWEEN

2007-10-25T18:04:00.000-07:00

Today, 10/25/07, I had my 10th Tysabri Infusion. I was counting the days!

Tysabri Gives You Hope

2007-09-20T19:14:00.000-07:00

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I just got home from having my Tysabri infusion! Yeah!! I was feeling pretty bad, and was counting the days until my next infusion. It's Sept. 27, 2007 and I just had my Tysabri which gives me such hope!!
I wish everyone could feel the way I do!

HAPPY 1st BIRTHDAY TYSABRI

2007-07-27T07:37:00.000-07:00

Had my Tysabri infusion on July 25th and feel wonderful! After my last infusion the pain in my face was much less, arthritis was better, helped my double vision and cognitive problems better. Then, about the 10th day, it all started to come back, but not as bad as it was before my infusion. So that is all GOOD! My Ulcerative Colitis is giving me problems, as usual! I told the lady that was giving me my infusion that I hope "this batch" of Tysabri was as good as the last batch"! ha, ha.

So, keep your fingers crossed that it is!! Oh, also, no exacerbations since I started Tysabri in December. WoW!

HAPPY 4th OF JULY!!

2007-07-10T08:47:00.001-07:00

On June 27 I got my Tysabri infusion. Well, the next day, I was up at 6 a.m. and was so full of energy! That went away the next day. BUT, I felt really good for 10 days!!
I had some symptoms, very light, and then on the 10th day, I was really not feeling well at all. I was dizzy, stomach problems, hand not working, and etc. I looked at my calender, and it was exactly 10 since my infusion!! I couldn't believe it!! I asked my infusion nurse about it, and she said that she had heard from several of her clients that between 10-12 days the effects of the Tysabri seems to wear off.

But, hey, that's not bad! This time, I still had the burning in my face, and some shooting pains in my legs, but not the constant pain. So GOOD NEWS!!

I also bought a "Cool Shirt" and wear it daily in the heat. It really works!!
I am so happy with it! If you go to the website, you can order the shirt in a t-shirt or the poncho. If you call, I talked to Dave and he was so helpful!

TYSABRI DIARY MAY

2007-06-04T10:09:00.000-07:00

I have had a Tysabri infusion on May 3rd, and on May 30th. The day after my infusion was so wonderful! Lots of energy, nothing in my body hurt. I felt like a normal person must feel everyday. But, the next day something that hurts comes back and on the third day, EVERTHING comes back! I get so depressed! I know Tysabri is not a "CURE", but it just feels so good that one day, that you just want the Good feelings to stay.

I always think, maybe the next infusion will get better results. Remember when I had 10 days of feeling wonderful? What happened?

I have to admit that I have not had an exaserbation since starting Tysabri, and that's a GOOD THING!

HAPPY SPRING!!

2007-04-13T09:35:00.001-07:00

After having my Tysabri I had 2 wonderful days without any MS pain. I look back and see that after my second infusion I had 10 days. Since I had to go off of Tysabri for 8 weeks, I'm starting over, so after my next infusion, I should be back on track. Did not have any "D" after my infusion so I know it's not the Tysabri. YEAH!!

I GOT MY TYSABRI

2007-04-06T08:39:00.000-07:00

YEAH!!!!

LAUREN AND I FINALLY MEET

2007-04-03T08:18:00.000-07:00

Lauren and I met at a seminar on March 31, 2007 with Dr. David Brandes and Dr. Daniel Bardari speakers on MS and also Tysabri. I learned so much and wish everyone could have attended. You might know Lauren's blog "LIVING WITH MS".

I can't wait until Wed. when I can get my TYSABRI infusion!!! It is out of my system and I need it back in there working it's magic on me! I'll let you know what Is happening to me after a few days!

2007-03-27T08:41:00.000-07:00

My shaking right hand is back, limping because of foot pain, walking like I'm drunk! Can hardly type the right words!
BUT, my "D" is gone. Oh, no!!! I can only pray it's not the Tysabri. Go for my next infusion April 6th! Pray for me!!

COULD NOT HAVE MY TYSABRI!!

2007-03-22T09:02:00.000-07:00

I went to get my infusion yesterday, and before you get the infusion you have to see the doctor. I told the doctor about my stomach the" D" word. I was told that " I COULDN'T HAVE IT!!"
I almost started to cry, and beg! They called my stomach doctor and he's going to order tests. YUCK! I have to wait for 2 wks. until the Tysabri is out of my system to see if the "D" word is a reaction to the Tysabri. If I do have an infection in my stomach, the Tysabri makes your body not be able to fight the infection and I could end up with real trouble.
I told them that my MS symtoms are already coming back, I'm limping, tired and etc.. They still said "NO" Come back in 2 weeks and we'll see.

I FEEL LIKE A DRUG ADDICT!!!

I WANT MY TYSABRI NOW!!!!!

I DON'T WANT MY MS SYMPTOMS TO COME BACK!!!!

MS AWARENESS HITS OUR LOCAL NEWSPAPER

2007-03-12T18:18:00.000-07:00

"All I want is one person to get out of that fear mode. I was so afraid," Paul Glover says about why he's sharing his multiple sclerosis story. Before he received the diagnosis, he was a triathlete as well as a surfer

Former surfer wants to spread the word on MS
By Michelle L. Klampe March 9, 2007
Paul Glover was floating on his surfboard in the water just off Oxnard Shores when the effects of the disease struck. He felt disconnected, like his limbs weren't attached to his body. His speech was slurred and his equilibrium out of whack as he paddled back to shore. When he got out of the water, he couldn't keep hold of his long board.
"I just thought to myself, ‘Something's wrong here. This doesn't feel right,'" Glover said, describing the day four years ago. It was the last time Glover, an Oxnard resident and avid surfer much of his life, rode the waves. "I kept dropping my surfboard."

At first he thought he had water in his ears, or maybe suffered from surfer's ear, but a visit to the doctor and a careful ear-cleaning didn't correct the problem.
Finally an MRI and a spinal tap helped doctors pinpoint what ailed Glover: multiple sclerosis, a chronic and unpredictable disease of the central nervous system that can have both physical and cognitive symptoms that occur at random, sometimes months or years apart, often worsening over time. Symptoms include loss of balance, numbness and tingling, sensitivity to heat or cold, problems with memory and concentration, paralysis or vision problems.
Women are twice as likely as men to receive diagnoses of MS.
No government tracking system
It is a disease that is difficult to diagnose, treat, and even track. A recent review of medical research regarding MS indicated the disease may affect 50 percent more people than a previous review in 1982 indicated, according to the medical journal Neurology, which published an article on the subject in January. Researchers who conducted the review estimated one in 1,000 people could be affected, about 320,000 in the U.S.
However, the National Multiple Sclerosis Society believes even that number is too low. Its records indicate about 400,000 people in the U.S., including about 1,000 in Ventura County, are afflicted with the disease. There is no system for government tracking of the disease nationally, in part because it is not a communicable disease, said Marni Deckter, communications director for the Multiple Sclerosis Society's Southern California Chapter.
The National Multiple Sclerosis Society is developing a pilot study to determine whether it's feasible to track MS. Tracking could lead to better understanding of the disease, because it could reveal commonalities among those with MS.
"Knowing the numbers doesn't change the treatment," Deckter said. "It gives us a better chance of possibly looking at patterns (in people who have MS). The more we know, the closer we get to a cure."
Symptoms appear, disappear
Glover had other symptoms of MS before that day in the water, but he dismissed them as fatigue or possibly diabetes. It's a common response, in part because the irregular nature of the disease means symptoms can appear and disappear, sometimes months or years apart, Deckter said.
In addition, there is no test to determine whether a person actually has MS, but MRI tests can be used to help confirm the diagnosis.
Cyndee Miller received a diagnosis of MS in 2004 but suspected she had the disease long before that. Symptoms she associated with back surgery she underwent in the late 1980s were actually MS symptoms, she said. It wasn't until the disease flared up in 2004 that an MRI confirmed it.
"It's all a bunch of little things," Miller said of her symptoms, which include a burning, tingling sensation on one half of her face and in a band around her ankle as well as cognitive difficulties, such as problems with multitasking.
"I still think I can work. I want to go to work. Then I go to Target and forget what I came for," said Miller, who lives in Camarillo and worked as a medical office manager before her MS progressed to the point that she couldn't do the job. She attends a Camarillo support group and keeps a blog where she writes about MS and her experience with a new drug treatment called Tysabri.
Before Glover received a diagnosis of MS, he was a triathlete as well as a surfer. Though he was having difficulty with balance and walking, he never thought MS could be to blame. When he got the diagnosis, he still wasn't really sure what the disease was or how it would affect his life.
"I kept saying ‘What do I do? Where do I go?'" he said. Then he found the local Multiple Sclerosis Society office in Santa Barbara, where he got more information about the disease and found the weekly support group in Camarillo, where he can share his concerns, struggles and symptoms with Miller and others.
New campaign planned
This week, the society is marking its second annual national Multiple Sclerosis Awareness Week with a new campaign to help spread the word about the disease. In April, the society will host fundraising walks in Simi Valley and Santa Barbara.
"We want people to know what MS is and to know they are not alone," Deckter said.
That's one reason Glover is sharing his story. He doesn't want others who suspect they have MS, or who recently received diagnoses of the disease, to worry the way he did and not know where to find help.
"If I can just let one person know they are not alone, it's worth it," he said. "All I want is one person to get out of that fear mode. I was so afraid."
On the Net:
To read Cyndee Miller's blog on life with MS, visit http://cyndees.blogspot.com/

After 3rd Tysabri Infusion

2007-02-20T09:15:00.000-08:00

It's been 6 days since my last Tysabri infusion and I wish I had better news. The day after my infusion I had so much energy that I was flying! I got so much done! By the afternoon I crashed and burned, went to bed. I guess I wore myself out. Day 2 until now, I have had the same old burning in face and everywhere else. Not much energy. Lots of the diarrhea. I have noticed that diarrhea is one of my side effects of Tysabri.
Wish me luck, this weekend I'll be at the California Speedway for the Nascar races for 3 days! Hope I'm feeling much better by then! YIKES!!!!

HAPPY VALENTINES DAY

2007-02-14T09:45:00.000-08:00

HAPPY VALENTINES DAY!

This afternoon I get my third Tysabri infusion! YEAH!!! Can't wait! This is the best gift I could ever receive! Can you tell I'm excited?

I'll post soon and let you know how I'm doing.
Pray for me!

I WISH, I WISH

2007-01-22T19:35:00.000-08:00

I Wish it could have lasted longer!! The pain and confusion is back! I was feeling SO GOOD for 10 days, and then WHAM, all was back in a flash. I knew it was back when I got lost going to the mall, my face was burning and etc. Has this happened to any of you after taking Tysabri? Don't get me wrong, I'm grateful for 10 great days free of everything, and I know Tysabri is not a cure, but darn it, it felt so good!!!!!
Can't wait for Valentine's Day for my next infusion.
Write me and tell me if this has happened to you.

7 DAYS AFTER LAST INFUSION

2007-01-19T11:12:00.000-08:00

It's been 7 days since my last infusion and Thank God, I HAVE NO PAIN!!!
I have been out shopping, trying not to over do it, and no pain.
I have less burning pain in my face.
And I'm not such a "dizzy blonde" any more.
My next infusion is Valentine Day, I can't think of a better gift than my Tysabri infusion.

2007-01-16T09:23:00.000-08:00

I had my second Tysabri infusion on Friday the 12th of Jan.!!!! That was 4 days ago and guess what? No Pain yet!!!!!! Thank you Tysabri!!! My burning pain in my face in lesser, the burning bands are gone, and my arthritis in my left foot has not come back!!! Yet! I spoke the the nurse that was giving me my infusion and she was telling me that 2 ladies that walked with canes were no longer using their canes!!! I was with another lady, having her infusion, and after her first infusion she could feel the carpet on the floor. I guess she has no feeling on the bottom of her feet. I am just so excited and can't wait until Feb.14th, when I have my next infusion!!!!!! I belong to two MS groups and I am like a walking advertisement for Tysabri, urging them to be an advocate and get strarted with Tysabri!! Please let me know if any of you are having some good side effects from Tysabri!

I Have A Question

2007-01-05T09:58:00.000-08:00

Since taking Tysabri I have had something happen to me and I want to know if anyone taking Tysabri or anyone with MS has had this happen to them. Here it goes: Inside my body I feel like jello that is quivering. I've had it happen to me twice. It's not a shocking feeling, I've had those. I look around to see if we are having a earthquake. (live in Southern California) dah!!!
I've had this feeling lying down and sitting up. Not a dizzy feeling, I've had that. Let me know if this has happened to you.
Thanks

2007-01-05T09:53:00.001-08:00

Zoey & Cyndee

2007-01-03T16:55:00.001-08:00

Zoey & Cyndee
Originally uploaded by cyndmill.

2007-01-03T13:20:00.000-08:00

Well, it's the new year and I've decided to keep a journal about what is happening in my life, and living with MS.
Last December I had my first infussion of Tysabri. I was so nervous! I saw the doctor, had my regular exam, and then a very nice nurse put in the IV, found the vein the first time, and we sat there talking for one hour while I was having the infusion and then while she was observing me, we talked somemore! It was so EASY!!! I had no reactions at all. That night and the following day, I just couldn't believe that all my pain was gone! It only lasted 2 days, but, hey, 2 days of no pain!! I'll take any day with no pain. I will be receiving my second infusion next Friday!!!! I am so Excited!!! What if I had no pain for 3 days!!!!
Laurens' (Living with MS) blog, has inspired me to do this blog. She is so inspiring!! Thanks Lauren!
I would like to hear from other MS patients, so feel free to send comments. Thanks!

2007-01-03T10:42:00.000-08:00