RESULTS WILL VARY!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby chrishasms » Mon Sep 10, 2007 2:09 pm

I got a chair I can use for distance. The Walkaide lets me live life as normally as possible around the house and with easy stuff. I'm getting more ambulatory but it's a lot of work!!

Man thanks so much for the advice. I had no idea I was right in the middle of it all in downtown Detroit.
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Postby Loobie » Mon Sep 10, 2007 2:22 pm

You could always stay at the giant Barbie House! Seriously, I have been to Ford more times than I care to imagine and we always stayed at the Greenfield Inn. It's this big Best Western with a Ford Motor Co. motif that looks like a giant Barbie House. It's actually a nice hotel, but the first time I got out of the car and saw a big, pink hotel, I thought I was in Mary Kay-zhakstan not Dearborn!

Bob is right. That museum has many, many interesting things in it. I'm one of those people who hated musuems even before MS. For some reason walking around on concrete floors for hours just looking at stuff never appealled to me (and it hurt my feet), but that place is an exception. Don't push yourself too hard, but don't miss that place if you can make it there.
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Postby Lyon » Mon Sep 10, 2007 7:02 pm

oo
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Postby IHaveMS-com » Mon Sep 10, 2007 7:16 pm

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 » Mon Sep 10, 2007 7:39 pm

oo
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Postby MaggieMae » Tue Sep 11, 2007 4:49 am

All you intelligent people who I count on for their advice,

Did anyone research Revimmune on the Accentia website?
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Postby Lyon » Tue Sep 11, 2007 5:11 am

oo
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Postby Lyon » Mon Sep 24, 2007 6:21 pm

oo
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Postby MaggieMae » Wed Sep 26, 2007 5:03 am

Hi All,

Well my husband had his appointment with his neurologist to discuss Tysabri. Went in feeling hopeful, came out feeling defeated. I know this is the Tovaxin page, but since I had mentioned before that my husband wouldn't qualify for the Tovaxin trials and that his doctor had mentioned Tysabri, I wanted to update you all and get your opinions. His neurologist said that he has five patients on Tysabri who are similar to my husband - older, Secondary Progressive, etc. My husband would be the oldest. He said that Tysabri works better for relapsing/remitting patients. Of the five older patients who are on Tysabri, 3 got worse (walking) and 2 remained about the same. He mentioned that the benefits that these patients noticed were more energy and less depression, but their walkig did not improve. He said it may keep my husband about where he is for another five years compared to staying at this stage for maybe two years. Naturally, this is all speculation. What I fear is, would his ability to walk decline faster? Did these patients' ability to walk decline because of the Tysabri or were they already in a decline. I thought of taking him to John Hopkins, which would not be easy for us to do, but then I just read the post from Bob that a patient did passed away in the HDC study.
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Postby robbie » Wed Sep 26, 2007 5:32 am

He said that Tysabri works better for relapsing/remitting patients.

can someone explain this to me why why why if your sp or pp is the same as rr just more constant why do these drugs only seem to work on rr. they are just using the natural corse of ms to boost their positive results it's bullshit. So if they find a drug that is affective on sp and pp then does this mean that it won't help rr i don't think so, once again bullshit...
Had ms for over 19 years now.
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Postby MaggieMae » Wed Sep 26, 2007 5:35 am

Neurologist said more helpful when RR because of more inflammation and also less permanent damage. That is what I got from the conversation. But then again, I'm sure I missed some of what he was saying.
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Postby Loobie » Wed Sep 26, 2007 6:08 am

Robbie,

I've always felt that way about using the natural course to show drug efficacy. I look at those ads in the magazines that show someone "getting on with their life" after a year of MS and being freshly diagnosed! Hell, after a year on Avonex (basically a year after dx), I was still very functional; and you are right, I would have been even if I was not on it I feel. The first five years can be very bad for some, but most of us have it pretty easy early on. I have always thought that they should show the same person 5 or 6 years later and see if they are still mountain biking. Maybe just sour grapes, but I've always felt that way too. I have been off of it for almost three years, and I didn't have any change until the last six months; which BTW, have sucked!
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Postby chrishasms » Wed Sep 26, 2007 6:35 am

Well I'm number 65 on the Revimmune list. Lets hope it doesn't kill me!

The only drug I saw or have seen any "improvement" in symptoms is LDN. If I forget to take it I shake. I've tried it more than once and have forgotten to take it and it does not take me long to remember why. I'm not kidding either.

Folks, the difference between SPMS, RRMS, PPMS, is MRI activity. RRMS shows the most MRI activity, which is why they use it in studies. SPMS is where the lesions start to lesson and disability really starts to kick in. PPMS, the lesions are gone and unfortunately the atrophy starts in the CNS. This where there are many "black holes".

This is how the doctors at the Rocky Mountain MS Society explained it to me. Considering these folks have like 150 books on MS I figure they got a good grip on definitions :P
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Postby MaggieMae » Wed Sep 26, 2007 7:22 am

Chrishasms,

Since you are number 65, when do you think your treatment will begin? Are you being treated at John Hopkins? How did you sign up for the trial?
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Postby chrishasms » Wed Sep 26, 2007 8:23 am

From what I understand it's happening at a hospital in Long Island. I have some family in CT that I can recover at for a week after the hospital stuff. The thing that really surprised me is they asked for my insurance info.

The folk I emailed were elocher@notes.cc.sunysb.edu

She will forward you to a phone number to call the folk. I was cognitively dumb and deleted it I guess. Then if you would, put it up on the Revimmune board.

They told me it could be any day to 2 years from now lol. I'm just in a holding pattern right now.
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