Out of Africa

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
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AllyB
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Post by AllyB »

The doggone thing about nasty tricks is that they ALWAYS backfire
I shall bow to your superior wisdom on that one as you seem to have a LOT of experience - I bet the poor guy still shudders when he thinks of that :lol: I think we should all hear more about your life experiences as they seem kinda interesting.
I only suggested the turkey thing as I didn't want you thinking I had gone soft or anything......
How is your wife doing on the trial btw?
Take care
Al
Lyon
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Post by Lyon »

How is your wife doing on the trial btw?
While I would recommend that anyone with MS making an educated consideration of available clinical trials, I have to admit that there is more to it than there seems.

What comes with entrance into a clinical trial is the undying need to try to determine if you are on the "real" treatment, and what the course of your MS might have been otherwise.

She was diagnosed in Feb? March? of 2006 and got her first Tovaxin injection in May of 2007. Although my wife experienced no outward signs, the baseline MRI for the Tovaxin trial showed a new enhancing lesion.

What she experienced was that her EDSS went from 3.0 at one appointment and 3.5 at the time of her first injection, down to a 1.0 at the time of her second injection. Did the Tovaxin do it? Was it time for that lesion to "resolve" on it's own? Did the Tovaxin bring a quick end to what might have been a humdinger of a lesion? Is she even on Tovaxin or placebo? I have no way of knowing with certainty.

Has MRI shown any new lesions since that time? What has her EDSS done since that time? To be honest, to avoid giving myself and others the wrong impression I've been staying out of the room so that I don't know any of that information and can't report it.

As far as we can tell, my wife is doing wonderfully. No new symptoms, no noticeable advancement since she was diagnosed, but that isn't necessarily proof positive because people have had an "event", gone ten years with nothing and then got hammered.

Personally, I have very strong belief in Tovaxin and the double blind/placebo clinical trial is something which has to be endured until she gets in the open label phase next May.

Please, those in other countries should have a little more patience with our Commander in Chief. This is a trying time and he's just a little mixed up right now Image

Bob
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AllyB
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Post by AllyB »

I am so glad that your wife is doing well, and will choose to believe for the moment that the Tovaxin is helping her (in the absence of evidence to the contrary, I will be optimistic :D ). In any case, the fact is, she is well, considering that she has ms, and you gotta take each day as it comes, so that is a huge blessing...
I don't think S.Africa is included in the Tovaxin trial - I know we are doing one for FTY (can't keep all the alpha-numeric names straight, but I am sure you know the one I mean) - my neuro discussed it with me, but HE decided to keep me on the Avonex to give it a longer chance (had only been on it for 4 months or so when he started the trial). Can't wait to see the formal Tovaxin results as it sounds so promising.
Thanks for the update and all the best for the future :D

I got a bit of a fright when I first saw the pic on your post as I thought for a split second that you were showing us a pic of your wife, and it just seemed a bit odd :?:
Then I read your last sentence, and had a closer look... :oops: Whew, was I relieved when i finally figured it out (bit slow today) :wink:

Take care
Al
Lyon
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Post by Lyon »

AllyB wrote: I got a bit of a fright when I first saw the pic on your post as I thought for a split second that you were showing us a pic of your wife, and it just seemed a bit odd :?:
YOU GOT A FRIGHT? Reading your post literally sent a chill down my spine! If I woke up with my arm under that, I'd chew my arm off to avoid waking him/her and jump out the window without a consideration of whether or not the glass was closed.

Bob
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AllyB
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Post by AllyB »

Hi Bob

I really should apologise, but knowing how you feel about apologies right now....I really don't want to make you heave!
Truly, I just glimpsed the blond hair, and knew something was off about the face, but thought my eyes were deceiving me.....Chewing your arm off seems a bit extreme though, you could just sort of quietly excuse yourself and hope you could run faster than her (him?) :wink:

Hope this has spiced things up a bit for you...But wasn't meant to be an insult - you know me, I write as I speak, often without forethought and I was killing myself laughing when I realised my error (split second), so had to tell you!

Good on ya mate, as our Aussie friends would say.
Al
Lyon
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Post by Lyon »

AllyB wrote: Truly, I just glimpsed the blond hair, and knew something was off about the face, but thought my eyes were deceiving me.....
In that case I should probably mention right off that this blonde bombshell isn't my wife either, but might look a little familiar!
Bob

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AllyB
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Post by AllyB »

Hey Bob

Wow - bombshell is right, love the hair! I am glad you clarifyed the situation up front this time...
The graphics are so good - even got the earings in the appropriate place for the face - where do you get these things?
No, don't answer, I would hate you to incriminate yourself on the 'net :P
Al
Lyon
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Post by Lyon »

One of my cousins never typed a word in his life but he forwards every junk and joke email making the rounds.

Usually I delete anything he sends but this one has multiple male political figures whose images have been altered to the feminine state.

In truth, I should have deleted this one too!

Bob
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TwistedHelix
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Post by TwistedHelix »

OMG… So let me get this straight: George W Bush is on the Tovaxin trial, and THIS is one of the side effects?! And Charlie boy, he has ambitions to become a queen, right? I'm so confused…
Dom
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Post by Lyon »

That's good Dom. Confused is right where I want you. I've given up on trying to dazzle anyone with my brilliance so I do my best to baffle them with my bullshi#!

Bob
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