update on evil refrigerator/cuteus' theory

[rearfang]

Hi everyone,
Wanted to let you all know that I talked with the pharmacist at Pegassist-- they actually had me call the pharmacy that I get meds through and had their pharmacist talk to them directly, because they do not share this kind of info with anyone other than health care professionals. Guess what? The pharmacist told me anyway that the peg is actually good at room temp for up to 6 days. (Not that I would recommend that, but thought it might be valuable for others to know.)

Cuteus,
I have definitely noticed a similar problem with words since beginning tx--if you look at my question from the fridge incident, you'll notice I typed "technological" instead of "technical". A few weeks ago I was trying to say the word "schedule", but "menu" was all I could come up with.
Lauren

[jmjm530]

It doesn't surprise me that it can last six days out of the fridge but this is the first I've ever heard of it. Both my pharmacist and Pegasyst have used 24 hours as a guideline. Did this info come from your pharmacist or the Pegassyst pharmacist? It's probably like the expiration date on pills. I took a valium once fifteen years old and it worked just fine. :)

-- Jim

[rearfang]

Jim,
The Peg pharmacist told my pharmacist this on the phone. Then my pharmacist (actually a pharmacist from Pharmacare, who delivers my meds--not someone I know personally) called me and relayed the info. I still feel paranoid about the efficacy of the med, but am assuming that I've been told the truth.

[Wasabi Pea]

I'm wondering if riba is a major factor in this "phenomena."  I've been off of riba for maybe three weeks, and I'm starting to remember my words a little better. <G>  I swear, it seems as though I've become dumb sometimes.  I'm always snapping my fingers and saying, "You know, that thing that means this," or "That guy who was in the movie with the girl who won an Oscar for a different movie."  Terrible.

The hardest thing I've been coping with as far as brain dysfunction (if I can call it that) is in my job.  I'm a court reporter, and everything you take down on a stenomachine is phonetic.  But for some reason, many, many words are eluding my fingers.  In hearings, my face is scrunched up, my eyebrows drawn down, and -- I shamefully admit it -- I've snapped at more than a few attorneys to SLOW the heck down.  It takes me a little longer to process the more difficult-to-understand speakers.  

I like to write fiction as well, and until recently, that aspect of my life has deserted me.  I hope it doesn't abandon me again when I return to full tx.  

Pats on the back all around for everyone who's going through tx.  We deserve it!  What's that word?  Oh, yeah..."kudos." <g>

[cuteus]

glad to hear the news. I was told something similar.

as for the disconnect issue, it is true that sometimes it is haste that affects my typing, so those times it does not matter, but when I am looking at the typed word as it is being placed in the window and it LOOKS/sounds like the word I was thinking of, it passes as appropriate and I don't catch it until I read it afterwards, a couple of times. I have been paying close attention this year, in mine and others writing, it should not concern me so much, I can see how those that are journalists would freak out, though. I know donl also writes and had mentioned some trouble while on tx and now post tx.
rearfang; that is the kind of stuff I was referring to(your mixed words issue). That it looks right to us while writing is odd!

[jmjm530]

"those that are journalists would freak out, though."

As they say, real writing is re-writing. But on the internet, a fast-paced style of its own has involved where thoughts are put down as fast as one can type for the sake of fast transfer of information.  It works for the media and allows almost "real time" communication.

I write for a living, and would never hand in anything in the rough-draft form I use on the interenet. But the trade-off is time. If I were to re-write things to a journalistic standard, a post like this might take twenty minutes instead of twenty seconds.

-- Jim

[rearfang]

Cun,
Just my 2 cents, but I would treat. You've got minimal damage and age on your side now that you won't later. Glad your news is good, whatever you decide.
Lauren

[friole]

Yes, as rearfang said, glad the news is good and that you do have a choice.  i think a lot will depend upon whether you can tolerate the treatment.  I think with a new doctor (weren't you considering that?) you could do well.  Weren't you pulled for a rash, but then you said the side got a lot worse, and you were glad you were pulled?  What is the game plan should you decide to treat.

I too have minimal damage but decided to treat now.  
Kathy

[cquest]

The 'file not found' brain skip is not just tx related...I have had that problem for a while...Then those few days I was on tx I noticed a steady decline and by Wed, I was afraid I was a danger to myself and others...so to speak of course...

I got the results of the Fibrosure test:

Fibrosis score: 0.10 = 0.00 to 0.21 is no fibrosis
Necroinflammat score: 0.12 = 0.00 - 0.17 is no activity

So very very little damage to my liver! Whew! Now the question is should I tx and get rid of this thing since there is no damage or not tx because there is no damage???? I might wait a bit, keep up the liver friendly stuff and hope something better comes along...I don't know what to do...
Cin

[1fairygirl]

I know exactly what you mean about trouble typing.  I will go to type "the" and end up with "that" or something totally different!!!  It is frustrating.  I had trouble before treatment with trying to remember words or names I wanted to speak.  That continues and now I have the same trouble with typing.  It's not because of liver damage, I'm stage and grade 1, it's just the hepatitis.  My family is starting to get used to it, I'm NOT.  I sure hope this gets better....I'm so glad I'm not a speech writer : )
Smiles, Sue

[kesd]

not only brain dysfunction with words but thoughts too.  I was at Walgreens yesterday to buy a birthday card for my brother's son.  It took me about 1 1/2 minutes to figure out I needed a happy birthday nephew card and not a happy birthday cousin card...YIKES.  I don't even want to tell about the thought process I have faced sitting in my car trying to figure out how to get from point A to point B in a city I've lived in for 13 years!!!!! :)   kristin

[cuteus]

and you don't think it is age related? are you on tx? can't remember what you posted before...another one. like someone said, it was there to some extent prior to tx, got worse on tx and post tx is not entirely gone.

[SJL]

i JUST WANT TO MAKE SURE THAT YOU SAW MY LAST COMMENT ON INFERGEN (TITLE.) I WOULD APPRECIATE YOUR THOUGHTS. MY HOPES AND PRAYERS ARE WITH EVERYONE GOING THROUGH THIS THERAPY. I AM SURE THAT THEIR ARE MANY SUCH AS I WHO WERE SCHOCKED AT ALL OF THE SIDE EFFECTS WHICH CAME ALOMG FOR THE RIDE.I LITERALLY CANNOT AND WILL NOT GIVE UP, AFTER ALMOST 3 YRS. OF TREATMENT. ANY SUGGESTIONS FROM ANYONE?? GRADE 3, STAGE 4, WITH PROBABLE CIRRHOSIS. I HAVE TAKEN PEG-INTRON/RIBA (48 WKS.)-RELAPSED---AND RECENTLY INFERGEN/RIBA (62) WKS, DAILY INJECTIONS, AND RELAPSED. i AM NOT FEELING THE GREATEST. THANKS FOR LISTENING AND I KNOW THAT SOMEONE HAS BEEN WHERE I AM NOW-I AM SEARCHING FOR ANYTHING WHICH MIGHT HELP!I WISH EVERYONE A GREAT DAY-TODAY.

SANDY

[cuteus]

that is hard! all those months of tx and still not SVR. Did you respond early to tx? or did you,like me, still have detectable virus at wk 12? It seems that more time is needed for slowly responding folks, and it also seems that more time or something is needed for some g1s.  It does sound that you have tried everything out there, but some members here have gotten the precious SVR on the same medicines; pegylated interferon + riba, the 3 or 4th time around, by extending to at least 72 wks.  I hope you find a path you can follow soon. If you decide on current meds,  make sure they treat the anemia early, many of the sides are actually the influence of oxygen reduction to the organs.
GL to you

[kesd]

yes i am on tx---week 15 tonite. seems to have gotten worse with treatment.  like you, I did have some brain glitches before tx but nothing like this--seems to happen more often than before tx started.  could be age too---good point.  I am 45.  could even be stress related.  i do know stress can cause brain glitches.  take care