Just FedExed My Records to JH.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby 777 » Wed Apr 23, 2008 12:16 pm

My neuro was there giving a speech the same day my records arrived. He probably talked to the neuro's there since he knows my history.
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Postby Xenu » Wed Apr 23, 2008 7:52 pm

Jamie: If possible, please keep us posted on how things go.

777: Congratulations! I am still waiting for some kind of callback, but they just received the CD of my brain / spine scans on Monday (04/21), and I was just able to overnight FedEx them my paper file today, meaning that they'll be getting that tomorrow morning. So hopefully I will hear back from them by the end of April.

Gah...every day is such a heady mix of hope and fear for me when I think about HiCy...
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Postby Xenu » Wed Apr 23, 2008 7:55 pm

Also, Chris:

I notice in one of your photos (on your website) there is a pic of you in the hotel room with ice packs everywhere and a caption like "trying to beat the fever."

Did you spike a fever while your immune system was gone (or still building back up)? If so, do you know how common that is? Does it mean the body is fighting a virus / infection or is it caused by something else?
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Postby chrishasms » Thu Apr 24, 2008 6:01 am

There is a 2/3 chance you will get a neutropenic fever. It happens when your counts are at the lowest. It means your body is starting to work again. It sucks but it's not that bad. You are not sick just feverish.

Make sure you read the blog entries regarding the fever because it's very important regarding the procedure.
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Postby 777 » Thu Apr 24, 2008 8:09 am

Chris how much weight did you lose? I was told to expect a 20-30 pound weight loss. I did read over your blog and didnt see you mention weight loss. just curious if you did.
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Postby chrishasms » Thu Apr 24, 2008 8:12 am

Pfffffffffffffffffffffffffffffffffffffffffft....I wish!!! Nope you will lose 2-3 lbs and a shiznit of hair.

Most I heard of was 5lbs.

Now I think I will walk to my mailbox again.
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Postby 777 » Thu Apr 24, 2008 8:15 am

well there is always wigs. nicer than my real hair anyway. Hair grows back! hopefully not funky after chemo.
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Postby chrishasms » Thu Apr 24, 2008 8:34 am

I'm planning on growing my hair back starting July because that is my three month point and by then my hair should be back to it's normal color.

Sometimes and in my case it did, your hair will change color in spots. All the places I lost hair I am now blond instead of a redhead. It is slowly coming back. By July it should be normal again.
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Postby 777 » Thu Apr 24, 2008 8:43 am

Not even sure what my natural color is anymore. But I have heard one story where someone said their hair grew out and it was red and frizzy. maybe it's different with everyone. I wouldnt mind my hair growing back blonde, would save me heaps on hair color. :P
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Postby Xenu » Thu Apr 24, 2008 9:02 am

Make sure you read the blog entries regarding the fever because it's very important regarding the procedure.


Chris,

I've looked through (did a search for "fever" on your blog), and the only thing I am seeing is "DO NOT FIGHT IT."

Is there anything else I should know??

XO,
V.
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Postby 777 » Thu Apr 24, 2008 9:04 am

The fever part scares me the most. So what happens if your fever goes up to 101 or higher? Does it mean we caught a bug and have no way to fight it? Is there anything they can do to help us in case this happens?
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Postby chrishasms » Thu Apr 24, 2008 9:11 am

Nope. If it happens they give you a number to call. We thought I would end up hospitalized if it got to 100.4...I got to 100.2!

We were wrong. It's really bad fever they will hospitalize you for it but such a little fever is no big deal. They would have given me some extra anti everything as a precaution and let it happen. It would have been the same thing only I would have been there in a controlled environment for a few hours.

We have everyday documented for you. Just need to hit previous day and read it. The whole fever is documented. Hell...everything from the paper signing to me peeing on my wife is there! lol
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Postby Xenu » Thu Apr 24, 2008 9:22 am

Honestly what scares me the most (and this is really, truly ridiculous) is the prospect of vomiting.

But please keep in mind that I haven't puked in 22 years.

Twenty-two.

You'd be leery of it, too.

Christ, I even got salmonella food poisoning in 2000 and was sick for a month----but I never once puked! :P
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Postby 777 » Thu Apr 24, 2008 9:28 am

Some of those anti nausia meds are rough! I had some after my csection 8 weeks ago and i slept for 3 days. I think I rather puke than be drugged out on those meds. I say that now ofcourse, I may feel differently if I go through with this and feel really ill.
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Postby Xenu » Thu Apr 24, 2008 9:39 am

Sleeping for 3 days sounds totally fine to me. Especially if I have to choose between that and puking. LOL.
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