Re: House - slight topic change

[Guest guest]

Can you point me to more information about this?It is not something I came up with in the research leading up tomy daughter's diagnosis - but it might explain that she has relatively normal numbers (ALT, AST around 1.4xnormal, GGT around 4xnormal), but symptoms which most literature describes as later stage (itching - for at least 4 years, although she told me last night she thinks it is closer to 8), extreme fatigue, insomnia, and increasing difficulty in reasoning, memory, and writing skills. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Tuesday, March 31, 2009 5:17:02 PMSubject: "House"

They also mentioned the phenomenon that we all know -- that LFTs go higher initially, but they drop to more "normal" levels when the damage has been done.

Penny

[Guest guest]

,

Itching isn't associated with any particular stage of liver disease, but with

liver disease in general. AST and ALT are only minimally elevated in PSC. ALK

Phos and GGT are related to the ducts and are generally higher. Maybe you could

have your daughter's amonia level checked for HE? It 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

" House "

>

>

> They also mentioned the phenomenon that we all know -- that LFTs go higher

initially, but they drop to more " normal " levels when the damage has been done.

>

> Penny

>

>

>

>

[Guest guest]

,

Itching isn't associated with any particular stage of liver disease, but with

liver disease in general. AST and ALT are only minimally elevated in PSC. ALK

Phos and GGT are related to the ducts and are generally higher. Maybe you could

have your daughter's amonia level checked for HE? It 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

" House "

>

>

> They also mentioned the phenomenon that we all know -- that LFTs go higher

initially, but they drop to more " normal " levels when the damage has been done.

>

> Penny

>

>

>

>

[Guest guest]

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.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

[Guest guest]

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.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

[Guest guest]

,

I understand your concern. It is quite difficult at times to

understand what is normal developmental behavior (teens and young adults) and

what is caused by the disease. What really struck me though was your apparent

dissatisfaction with your doctor. I am not sure where you live, but I do

suggest that you get a second opinion since your doctor doesn’t appear to

be dealing with this satisfactorily. Many in this group (including Suzanne, my

daughter) have gone to the Mayo Clinic in Rochester. I took Suzanne there

primarily for the second opinion and I was pleased with our existing medical

team. My feeling was that this was too serious of a disease to not have a second

opinion.

Good luck to you and your daughter.

LINDA (Mom of Suzanne, 19, UC / PSC 2004, j-pouch 2007)

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.

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.

, Mom to 18 yo daughter UC

6/95, PSC 3/09.

[Guest guest]

,

I understand your concern. It is quite difficult at times to

understand what is normal developmental behavior (teens and young adults) and

what is caused by the disease. What really struck me though was your apparent

dissatisfaction with your doctor. I am not sure where you live, but I do

suggest that you get a second opinion since your doctor doesn’t appear to

be dealing with this satisfactorily. Many in this group (including Suzanne, my

daughter) have gone to the Mayo Clinic in Rochester. I took Suzanne there

primarily for the second opinion and I was pleased with our existing medical

team. My feeling was that this was too serious of a disease to not have a second

opinion.

Good luck to you and your daughter.

LINDA (Mom of Suzanne, 19, UC / PSC 2004, j-pouch 2007)

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.

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.

, Mom to 18 yo daughter UC

6/95, PSC 3/09.

[Guest guest]

I am not unhappy with her doctor. He has provided good solid treatment for her UC for 14 years, but he does have his limits and PSC may be beyond his because he doesn't have much direct experience with it and he is not comfortable practicing on the cutting edge of medicine or with treatments that are outside the realm of Westerm medicine - and both of those may be things we need to explore. We are in the process of getting a referral to the Cleveland Clinic. Unfortunately even though our insurer uses access to the Cleveland

Clinic as a selling point, it doesn't allow referrals through the

normal process, and they don't publish their alternate process. The last

time we needed one, figuring out the system delayed treatment for nearly a year by the time we had jumped through the additional hoops they had set up.I have, unfortunately, had far too many incidents, personally and with

other members of my family, in which I have had to really fight to get

appropriate treatment or diagnosis. The three times this has

involved my daughter, the (different) treating doctors at least initially insisted that nothing serious was wrong even though I was sure

there was (and was later proven to be correct). This time, because her symptoms were so vague, I didn't take some of them seriously until they were severe enough that I couldn't deny something was going on. She wasn't thinking freshman stress when they first started getting bad in November, but she did think she needed serious psychological/psychiatric help - and had arranged on her own to get help (but by the time we sorted out the insurance we had identified liver involvement). From what I know, that seems typical for liver disease. It is very similar to what I recently learned that her her aunt went through (who had stage 3 hep C at diagnosis) - so after her struggle both internally and with me, and then together with the doctor to get her symptoms taken seriously, I'm a little taken aback by suggestion in this forum that it is freshman stress, rather than her liver, that is causing her fatigue and difficulty with reasoning

(since I assumed many of you had similar experiences of struggling to have your fatigue and brain fog taken seriously). , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 1, 2009 6:26:08 AMSubject: RE: "House" - slight topic change

, I understand your concern. It is quite difficult at times to

understand what is normal developmental behavior (teens and young adults) and

what is caused by the disease. What really struck me though was your apparent

dissatisfaction with your doctor. I am not sure where you live, but I do

suggest that you get a second opinion since your doctor doesn’t appear to

be dealing with this satisfactorily. Many in this group (including Suzanne, my

daughter) have gone to the Mayo Clinic in Rochester. I took Suzanne there

primarily for the second opinion and I was pleased with our existing medical

team. My feeling was that this was too serious of a disease to not have a second

opinion. Good luck to you and your daughter.

LINDA (Mom of Suzanne, 19, UC / PSC 2004, j-pouch 2007)

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.

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.

, Mom to 18 yo daughter UC

6/95, PSC 3/09.

[Guest guest]

I am not unhappy with her doctor. He has provided good solid treatment for her UC for 14 years, but he does have his limits and PSC may be beyond his because he doesn't have much direct experience with it and he is not comfortable practicing on the cutting edge of medicine or with treatments that are outside the realm of Westerm medicine - and both of those may be things we need to explore. We are in the process of getting a referral to the Cleveland Clinic. Unfortunately even though our insurer uses access to the Cleveland

Clinic as a selling point, it doesn't allow referrals through the

normal process, and they don't publish their alternate process. The last

time we needed one, figuring out the system delayed treatment for nearly a year by the time we had jumped through the additional hoops they had set up.I have, unfortunately, had far too many incidents, personally and with

other members of my family, in which I have had to really fight to get

appropriate treatment or diagnosis. The three times this has

involved my daughter, the (different) treating doctors at least initially insisted that nothing serious was wrong even though I was sure

there was (and was later proven to be correct). This time, because her symptoms were so vague, I didn't take some of them seriously until they were severe enough that I couldn't deny something was going on. She wasn't thinking freshman stress when they first started getting bad in November, but she did think she needed serious psychological/psychiatric help - and had arranged on her own to get help (but by the time we sorted out the insurance we had identified liver involvement). From what I know, that seems typical for liver disease. It is very similar to what I recently learned that her her aunt went through (who had stage 3 hep C at diagnosis) - so after her struggle both internally and with me, and then together with the doctor to get her symptoms taken seriously, I'm a little taken aback by suggestion in this forum that it is freshman stress, rather than her liver, that is causing her fatigue and difficulty with reasoning

(since I assumed many of you had similar experiences of struggling to have your fatigue and brain fog taken seriously). , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 1, 2009 6:26:08 AMSubject: RE: "House" - slight topic change

, I understand your concern. It is quite difficult at times to

understand what is normal developmental behavior (teens and young adults) and

what is caused by the disease. What really struck me though was your apparent

dissatisfaction with your doctor. I am not sure where you live, but I do

suggest that you get a second opinion since your doctor doesn’t appear to

be dealing with this satisfactorily. Many in this group (including Suzanne, my

daughter) have gone to the Mayo Clinic in Rochester. I took Suzanne there

primarily for the second opinion and I was pleased with our existing medical

team. My feeling was that this was too serious of a disease to not have a second

opinion. Good luck to you and your daughter.

LINDA (Mom of Suzanne, 19, UC / PSC 2004, j-pouch 2007)

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.

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.

, Mom to 18 yo daughter UC

6/95, PSC 3/09.

[Guest guest]

I think that the LFTs rising and then dropping is a phenomenon that does

sometimes (but not always) occur, but you have to be careful what LFTs

you're talking about. Things like ALT, AST and Alk Phos. all went up

and stayed up for me, but they did drop slightly in the last month or

two before my transplant when my liver was actually starting to fail for

good. On the other hand, labs like albumin, bilirubin, and INR trended

worse over the entire course of the disease. They did show variations,

but the trend was to get worse.

I think maybe a good way to think about it is that the ALT, AST, and Alk

P. are indicators more of how much damage is currently being done. Once

there's not much liver left to damage, they can go down, but that's

usually not until the liver's in really bad shape. The other labs

(bilirubin, INR, albumin etc) tend to be better indicators of how much

damage has been done.... the actual ability of the liver to do it's

job. That's why they use some of those in calculating the MELD score

for the transplant list.

It's sort of like an engine that's burning oil and smoking. The smoke

is an indicator of a problem (it's burning up it's oil and losing it's

capacity to lubricate itself). When the oil is used up, the smoke will

stop, but the next step is for the engine to seize up, because it can't

work without the lubrication from the oil.

HTH

athan

[Guest guest]

I think that the LFTs rising and then dropping is a phenomenon that does

sometimes (but not always) occur, but you have to be careful what LFTs

you're talking about. Things like ALT, AST and Alk Phos. all went up

and stayed up for me, but they did drop slightly in the last month or

two before my transplant when my liver was actually starting to fail for

good. On the other hand, labs like albumin, bilirubin, and INR trended

worse over the entire course of the disease. They did show variations,

but the trend was to get worse.

I think maybe a good way to think about it is that the ALT, AST, and Alk

P. are indicators more of how much damage is currently being done. Once

there's not much liver left to damage, they can go down, but that's

usually not until the liver's in really bad shape. The other labs

(bilirubin, INR, albumin etc) tend to be better indicators of how much

damage has been done.... the actual ability of the liver to do it's

job. That's why they use some of those in calculating the MELD score

for the transplant list.

It's sort of like an engine that's burning oil and smoking. The smoke

is an indicator of a problem (it's burning up it's oil and losing it's

capacity to lubricate itself). When the oil is used up, the smoke will

stop, but the next step is for the engine to seize up, because it can't

work without the lubrication from the oil.

HTH

athan

[Guest guest]

Thanks - both for the distinction between different labs, and the relative stage we are talking about for the drop. Since she's not end stage, she is likely to be low heading up rather than back down after the damage.Where does GGT fit in with the mix? , Mom to 18 yo daughter UC 6/95, PSC 3/09To:

Sent: Wednesday, April 1, 2009 11:23:02 AMSubject: Re: "House" - slight topic change

I think that the LFTs rising and then dropping is a phenomenon that does

sometimes (but not always) occur, but you have to be careful what LFTs

you're talking about. Things like ALT, AST and Alk Phos. all went up

and stayed up for me, but they did drop slightly in the last month or

two before my transplant when my liver was actually starting to fail for

good. On the other hand, labs like albumin, bilirubin, and INR trended

worse over the entire course of the disease. They did show variations,

but the trend was to get worse.

I think maybe a good way to think about it is that the ALT, AST, and Alk

P. are indicators more of how much damage is currently being done. Once

there's not much liver left to damage, they can go down, but that's

usually not until the liver's in really bad shape. The other labs

(bilirubin, INR, albumin etc) tend to be better indicators of how much

damage has been done.... the actual ability of the liver to do it's

job.

[Guest guest]

Hi ,I think sometimes members of the group try to take the optimistic route even when it may not be appropriate. I have had the same problem as you regarding not having my symptoms taken seriously. My old GI doc at one point said he didn't think I had UC. He REALLY didn't think I had PSC. I have a new GI doctor now. I also have a hepatologist, who sometimes doesn't seem to take my symptoms seriously. My LFTs are normal, so theoretically I shouldn't have fatigue, but boy, do I have it.I think your follow-up e-mail spelled out the seriousness of your daughter's situation (and made it very clear) so that all of us here understand that her symptoms are clearly beyond simply freshman stress. They definitely sound serious, and are probably PSC related. Good luck to you and please keep us posted as to the progress of your daughter.Marie

Rediscover Hotmail®: Get e-mail storage that grows with you. Check it out.

[Guest guest]

Hi ,I think sometimes members of the group try to take the optimistic route even when it may not be appropriate. I have had the same problem as you regarding not having my symptoms taken seriously. My old GI doc at one point said he didn't think I had UC. He REALLY didn't think I had PSC. I have a new GI doctor now. I also have a hepatologist, who sometimes doesn't seem to take my symptoms seriously. My LFTs are normal, so theoretically I shouldn't have fatigue, but boy, do I have it.I think your follow-up e-mail spelled out the seriousness of your daughter's situation (and made it very clear) so that all of us here understand that her symptoms are clearly beyond simply freshman stress. They definitely sound serious, and are probably PSC related. Good luck to you and please keep us posted as to the progress of your daughter.Marie

Rediscover Hotmail®: Get e-mail storage that grows with you. Check it out.

[Guest guest]

Thanks. Out of self preservation (personal and for my family) I've had to get pretty good at sorting out medical stuff - far too many mystery illnesses in our family. When we got our first clue that liver was involved, a lot of things we hadn't understood over the years just fell in place. Unfortunately when I started to narrow the field within the realm of liver diseases everything lined up around PSC. I was really hoping I was wrong. (On the flip side, though, I'm really excited now about the Vancomycin trials - I've read the Stanford study, and it makes sense in the way that liver and PSC explained the symptoms we were seeing. It would be nice to "know" something medical and be proven right in a way I was happy about.)I was just very tired and cranky

last night, including being tired of being told I was exaggerating or imaging what was going on - and I hadn't expected it here. I probably overreacted.Your experiences with your GI doc sound like ours with our former GP. Even after my daughter was diagnosed with UC (after denying my requests for a referral to a GI doc for a year), our GP suggested that we had shot a gnat with a bazooka by using prednisone to get it under control. Wonder what he'd say now. , Mom to 18 yo daughter UC 6/95, PSC 3/09From: Marie Nilsson

To: Sent: Thursday, April 2, 2009 12:15:06 AMSubject: RE: "House" - slight topic change

Hi ,I think sometimes members of the group try to take the optimistic route even when it may not be appropriate. I have had the same problem as you regarding not having my symptoms taken seriously. My old GI doc at one point said he didn't think I had UC. He REALLY didn't think I had PSC. I have a new GI doctor now. I also have a hepatologist, who sometimes doesn't seem to take my symptoms seriously. My LFTs are normal, so theoretically I shouldn't have fatigue, but boy, do I have it.I think your follow-up e-mail spelled out the seriousness of your daughter's situation (and made it very clear) so that all of us here understand that her symptoms are clearly beyond simply freshman stress. They definitely sound serious, and are probably PSC related. Good luck to you and please keep us posted as to the progress of your daughter.Marie

Rediscover Hotmail®: Get e-mail storage that grows with you. Check it out.

[Guest guest]

Thanks. Out of self preservation (personal and for my family) I've had to get pretty good at sorting out medical stuff - far too many mystery illnesses in our family. When we got our first clue that liver was involved, a lot of things we hadn't understood over the years just fell in place. Unfortunately when I started to narrow the field within the realm of liver diseases everything lined up around PSC. I was really hoping I was wrong. (On the flip side, though, I'm really excited now about the Vancomycin trials - I've read the Stanford study, and it makes sense in the way that liver and PSC explained the symptoms we were seeing. It would be nice to "know" something medical and be proven right in a way I was happy about.)I was just very tired and cranky

last night, including being tired of being told I was exaggerating or imaging what was going on - and I hadn't expected it here. I probably overreacted.Your experiences with your GI doc sound like ours with our former GP. Even after my daughter was diagnosed with UC (after denying my requests for a referral to a GI doc for a year), our GP suggested that we had shot a gnat with a bazooka by using prednisone to get it under control. Wonder what he'd say now. , Mom to 18 yo daughter UC 6/95, PSC 3/09From: Marie Nilsson

To: Sent: Thursday, April 2, 2009 12:15:06 AMSubject: RE: "House" - slight topic change

Hi ,I think sometimes members of the group try to take the optimistic route even when it may not be appropriate. I have had the same problem as you regarding not having my symptoms taken seriously. My old GI doc at one point said he didn't think I had UC. He REALLY didn't think I had PSC. I have a new GI doctor now. I also have a hepatologist, who sometimes doesn't seem to take my symptoms seriously. My LFTs are normal, so theoretically I shouldn't have fatigue, but boy, do I have it.I think your follow-up e-mail spelled out the seriousness of your daughter's situation (and made it very clear) so that all of us here understand that her symptoms are clearly beyond simply freshman stress. They definitely sound serious, and are probably PSC related. Good luck to you and please keep us posted as to the progress of your daughter.Marie

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