RESULTS WILL VARY!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby chrishasms » Thu Jul 26, 2007 9:53 am

I don't want to sound dumb but I missed something Tim. What website did you see that report on?

I know of you and a couple of other folks doing a bit better but a 6 to 2 is amazing!! Almost unbelievable! If I didn't here it here, I wouldn't believe it!

Please elaborate- Thanks!
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Postby Lyon » Thu Jul 26, 2007 12:27 pm

oo
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Postby IHaveMS-com » Thu Jul 26, 2007 6:11 pm

Bob,

I am delegating you to go and straighten these folks out.

http://blog.myspace.com/index.cfm?fusea ... =292147425
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby IHaveMS-com » Thu Jul 26, 2007 6:32 pm

Hi Chris,

I don't want to sound dumb but I missed something Tim. What website did you see that report on?


You have not missed anything. Personal EDSS values have never been published. References to improvements in EDSS are made on a group average. I have been at lots of lunch meetings with my father, and I have contact with about half the people in my study.

Only 2 of them have every posted on any site that I know of. One of the posts was by a woman who was at the doctor's office while I was there. She posted that fact. I think there had been a comment that I might not really exist, and she was dispelling that.

Since you follow this site, I assume you have noticed that there are sporadic bursts of information and then nothing. People start out thinking that they will keep a timeline and update everyone on how they are doing, but the follow through is not there. I have been trying to quit posting for some time, but when I see a question I can answer, I usually do.

I know of you and a couple of other folks doing a bit better but a 6 to 2 is amazing!!


That is over a 3 year period. Look at Bob's wife. Her EDSS dropped more in 1 month that mine has in 3 years. Results will vary.

Almost unbelievable! If I didn't here it here, I wouldn't believe it!


Wow, you mean you believe everything you read on this site, even Bob's theories. (just kidding Bob) By the way Bob, I am 5' 10" tall, which is kind of average. I am the exact weight for my height, as pointed out somewhere on my website. My hair is red, but my magic cape is on backorder. And my father would disagree with you on the rich part. I do feel a rush of emotions as I write this post. Maybe that is a tear on my cheek, not.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby chrishasms » Thu Jul 26, 2007 6:52 pm

LOL...way too funny hehehehe
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Postby Lyon » Thu Jul 26, 2007 7:19 pm

oo
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Postby MaggieMae » Fri Jul 27, 2007 5:46 am

Tim,
Maybe these gentlemen think you are tall and skinny because they are not tall and not thin. (Just trying to be funny)
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Postby IHaveMS-com » Fri Jul 27, 2007 7:22 am

Hi MaggieMae,

MS is such a terrible disease on both the patient and their family, that any means that we can use to lighten the situation is always welcome.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Fri Jul 27, 2007 12:26 pm

oo
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Postby MaggieMae » Mon Jul 30, 2007 5:46 am

The weather here is taking a toll on my husband and his sister (especially his sister). Even though it has been hot, this is different. I can even feel it - headache. I know people who have other health problems (breathing, arthritis) and it seems to take a toll on them also.

Does anyone use the cooling vests?
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Postby IHaveMS-com » Mon Jul 30, 2007 7:41 am

Hi MaggieMae,

These are 2 links that will take you to a group of articles on two different Multiple Sclerosis sites.

National Multiple Sclerosis Society
http://www.nationalmssociety.org/site/S ... it&inc=100

Multiple Sclerosis Association of America
http://www.msaa.com/searchpro/index.asp ... search=%A0

This is a general article form the National Multiple Sclerosis Society on MS and heat. It suggests some other simple strategies for coping with heat.

Hot flash! It’s summer!
Summer beckons us with images of easygoing days. But it’s a mixed bag. Hot, muggy weather can sap anyone’s energy. For people with MS, hot weather often brings additional challenges. Heat can cause symptoms to appear or make the ones you already have feel worse. It can affect walking, thinking, strength, and energy level. As many as 60–80% of people with MS have had heat-related symptoms. One theory holds that while damaged nerves may be able to conduct electrical impulses adequately under ideal temperatures, higher temperatures interfere with the process. Fortunately, the effects of heat are usually temporary. With hot weather on the way, take time to assess your own sensitivity. You may then want to consider some CAM, or complementary and alternative medicine strategies.

Cool out
Cooling strategies can improve symptoms for many people. Many are just common sense (fans, air conditioning, cold drinks). A spritzer bottle of water is great to use during exercise. People report that dampened clothes and a fan may give symptomatic relief. Cool clothes rule Consider personal cooling garments. Vests, jackets, and neck wraps have pockets for inserting ice packs or refrigerated gels. Cooling suits that circulate fluids, a method called active cooling, are more expensive. Cooling garments may be covered by health insurance and may be tax-deductible. Research on the active cooling system funded by the National Aeronautics and Space Administration (NASA) showed that lowering core body temperature by only 0.5 degree Fahrenheit could produce small but immediate improvements in walking speed and vision and suggested that there may be long-term benefits as well.

Mind over matter?
There are several CAM strategies that don't need a thing. They're in your head, so to speak. Even though there’s scant clinical evidence for people with MS, there’s little risk involved, so they're worth considering. If nothing else, they might just help you feel more relaxed. Meditation has been shown to calm the nervous system and has been used to treat such medical conditions as high blood pressure and pain. There are many types, and most include breathing techniques. A basic meditation practice is sitting or lying comfortably, eyes open or closed, and simply focusing on breathing. Visualization involves creating a mental image. Images such as a waterfall flowing over your body may help you feel more comfortable. Develop an image that you like, and practice bringing it to mind. These are practices you can call on at any time, any where. But it’s best to practice a technique regularly so that you can access it in a pinch. Many health-care professionals have experience in teaching these techniques.

Yoga is cool, too
Certain yoga poses and breathing techniques are said to be “cooling.” Yoga practitioners believe that these poses may actually help lower core body temperature. Most gentle or restorative yoga classes are appropriate for people with MS. But many yoga poses are believed to create “heat,” so find an instructor experienced in adapting poses for people with special needs.

Listen to yourself
Biofeedback is a non-invasive therapy that teaches people how to regulate mental and bodily functions. It has been used to reduce blood pressure and treat pain. There is some evidence that biofeedback can help people learn to regulate body temperature. However, it has not been studied in people with MS. Since biofeedback can be expensive, consider the lack of evidence before trying this approach.

Choices
When exploring CAM, it’s important to be aware of the difference between proven evidence resulting from clinical studies and personal opinion based on individual experience. Like so many aspects of MS, CAM therapies affect individuals differently. You have to find what works for you. Dr. Allen C. Bowling, neurologist, and Tom Stewart, certified physician assistant, are both at the Rocky Mountain MS Center in Englewood, Colorado, which emphasizes a holistic approach to MS care. For more information about CAM and MS, go to www.ms-cam.org.

It’s important to tell your physician about any complementary treatments you are considering or taking. It’s equally important that your physician listen respectfully to your questions and concerns regarding CAM.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby chrishasms » Mon Jul 30, 2007 1:07 pm

I have a vest and it works wonders. It keeps me at right around 70. Everyone else is sweating but me. It was 50 bucks on ebay and it came with a vest, neck band, hat piece, and wrist bands. I've used the vest and hat peice but other than that I don't need the rest.
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Postby MaggieMae » Tue Jul 31, 2007 5:32 am

Thanks, Tim and Chris, for the info.
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Postby IHaveMS-com » Wed Sep 05, 2007 7:26 pm

Hi to all,

Please go back and read my first post of this thread. http://www.thisisms.com/ftopic-4133-0.html After that you can sing my ballad.

Timmy, Timmy Tovaxin
King of the wild stories
He was raised in the suburbs
Where he planted some trees
And was diagnosed with MS
Before he was 23
Timmy, Timmy Tovaxin
King of the wild stories
Last edited by IHaveMS-com on Thu Sep 06, 2007 7:04 am, edited 1 time in total.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Wed Sep 05, 2007 7:32 pm

oo
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