- Page 18 - Health, Medicine and Natural Healing 11

April 1, 2009

I'm glad you at least have a good point of reference. I think once you get through the insurance hurdles and can be seen by someone with knowledge it will make a difference.This is the place to vent your frustrations. We have all been down this road in one way or another. It, for lack of better terms,just sucks!!!! But we have each other, and that in and of itself is priceless!Remember to breathe! I sometimes forgot too ;o) in TexasFrom: Reeves <nlreeves (AT) yahoo (DOT) com>Subject: Re: "House" - slight topic changeTo: @ yahoogroups. comDate: Wednesday, April 1, 2009, 1:11

AM

My request was specific to the comment about the "the phenomenon that we all know -- that LFTs go higher initially, but

they drop to more "normal" levels when the damage has been done." That is not something I found in my research, and I want to know more about it.

I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.There was a fairly dramatic change that she noticed mid-November, at which point she literally thought she was going crazy because her mind stopped feeling/thinking right. The fatigue has gradually and steadily increased since then to the point where it is constant and relatively (for

her) extreme.. She has gone from being the valedictorian of her high school class who transitioned successfully to being a college freshman - far more successfully than I would have predicted - to a student who was unable to finish two papers in December because she could no longer concentrate and who is now at risk of failing every single class this semester because she cannot stay awake long enough to do her work. When she can stay awake she can't concentrate (she has make-up work to do in every class but one, some of it from the first couple of weeks of the semester, and she will drop one class in the next day or two because she has missed about half of the work in that class and just can't keep up). At the end of first semester, when she couldn't finish her papers,she managed to switch to doing work it was easier to concentrate on (Calculus she easily finished with an A, for example, and she had no problems completing the work in

every other class). Now, when the fatigue hits she is pretty much out of it for everything (including socializing) . February 10 was the last comfortable phone conversation I have had with her; the last before that was Decembe 17. I know the dates because those have been the only two conversations I have had with her since the first week in December when she has sounded at all interested in life - rather than just dead. The realization that her liver was involved (mid January) was actually a relief to her because it explained so many of the symptoms (some major, some minor, mostly intermittent) she has had over the years, and some that are new (she had headaches for the first time ever in December). Initially, we hoped it was drug toxicity that might be corrected by switching medication. Although I was pretty sure it was PSC by the end of January, I didn't share my suspicions with her to avoid adding an emotional

drain to the physical drain she was already experiencing. The worst of the symptoms are now relatively constant (itching and fatigue). The specific diagnosis (which she learned 12 days ago) while certainly emotionally devastating is too recent to have been the cause of her difficulties over the past three months. The first dramatic changes in her thinking (November - when she first started feeling something was wrong/December - when I could see something was wrong and it first seriously impacted her academic performance) came before we had any clue that there was something physical wrong, or that the liver was involved.So when Penny commented about the LFT numbers going higher then falling back to normal after the damage is done- and I see how dramatically different she has been since December - I want to find more information about this phenomenon - particularly since every reference I have found on itching and

thinking/reasoning difficulties associated with liver disorders describe these syptoms as being relatively late symptoms, and she has been itching at least for 4 years, and her ability to concentrate and do language based analysis dramatically declined around December.No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important)., Mom to 18 yo daughter UC 6/95, PSC 3/09..From: Logan Berg <cswb (AT) safelink (DOT) net>TIt seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking

problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC

April 1, 2009