RE: New Member - General Questions

[Guest guest]

Mike

As others have mentioned some other disease process might be going on in your daughter. I suggest you check for diabetes, which is also fairly common, especially if steroids have been used. Esophagitis and/or GERD may be present which makes it feel difficult to swallow. She may be experiencing Hepatic Encephalopathy (HE). Since her liver appears to be in reasonable condition, the docs might not have thought to check on this, but that is how I felt before my tx, and for a few months after.

You can also pursue other meds to help with the itching, I had UV/B light treatments, but many others had relief from meds. So... make an appt to pursue answers, and if you don't feel satisfied with your doc's recommendations, go to another medical provider. Many of us have had to find specialists who have studied this rare disease. There is help available but sometimes the search can be frustrating.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Mike

As others have mentioned some other disease process might be going on in your daughter. I suggest you check for diabetes, which is also fairly common, especially if steroids have been used. Esophagitis and/or GERD may be present which makes it feel difficult to swallow. She may be experiencing Hepatic Encephalopathy (HE). Since her liver appears to be in reasonable condition, the docs might not have thought to check on this, but that is how I felt before my tx, and for a few months after.

You can also pursue other meds to help with the itching, I had UV/B light treatments, but many others had relief from meds. So... make an appt to pursue answers, and if you don't feel satisfied with your doc's recommendations, go to another medical provider. Many of us have had to find specialists who have studied this rare disease. There is help available but sometimes the search can be frustrating.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Mike

As others have mentioned some other disease process might be going on in your daughter. I suggest you check for diabetes, which is also fairly common, especially if steroids have been used. Esophagitis and/or GERD may be present which makes it feel difficult to swallow. She may be experiencing Hepatic Encephalopathy (HE). Since her liver appears to be in reasonable condition, the docs might not have thought to check on this, but that is how I felt before my tx, and for a few months after.

You can also pursue other meds to help with the itching, I had UV/B light treatments, but many others had relief from meds. So... make an appt to pursue answers, and if you don't feel satisfied with your doc's recommendations, go to another medical provider. Many of us have had to find specialists who have studied this rare disease. There is help available but sometimes the search can be frustrating.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

blurred vision can be a result of vitamin A deficiency.

-------------- Original message --------------

4/28/07Hi,Our adult daughter has recently been diagnosed with PSC, although it is described as "not a classic case." She was hospitalized for several days while tests were run, had a tube protracting from her body, numerous procedures (e.g., ERCP), and currently has a stent. We are told her liver is in pretty good shape and she is not currently in need for a transplant.PSC and its affects are new to us, and we are still trying to learn more about the disease and its symptoms. I am listing below some of the symptoms she is experiencing and would be interested in receiving feedback from the group on whether, in your experiences, these are common to, or associated with, PSC. Thank you in advance for any feedback you can provide.--itching - while we know this is a symptom, does anyone have any suggestions on how to provide relief from this. She is currently taking Benadryl?--difficulty walking, e

specially lifting her feet. Has trouble maintaining her balance.--strong back pain.--arms and fingers and fingertips tingle.--blurred vision, hard to read (one of favorite things to do).--dizziness.--nauseous.--bad headaches.--body temperature- always seems to be hot.--shaking of the body, especially arms, hands, and face.--says her food feels like it is not going down - staying in throat or on top of chest.Mike

[Guest guest]

blurred vision can be a result of vitamin A deficiency.

-------------- Original message --------------

4/28/07Hi,Our adult daughter has recently been diagnosed with PSC, although it is described as "not a classic case." She was hospitalized for several days while tests were run, had a tube protracting from her body, numerous procedures (e.g., ERCP), and currently has a stent. We are told her liver is in pretty good shape and she is not currently in need for a transplant.PSC and its affects are new to us, and we are still trying to learn more about the disease and its symptoms. I am listing below some of the symptoms she is experiencing and would be interested in receiving feedback from the group on whether, in your experiences, these are common to, or associated with, PSC. Thank you in advance for any feedback you can provide.--itching - while we know this is a symptom, does anyone have any suggestions on how to provide relief from this. She is currently taking Benadryl?--difficulty walking, e

specially lifting her feet. Has trouble maintaining her balance.--strong back pain.--arms and fingers and fingertips tingle.--blurred vision, hard to read (one of favorite things to do).--dizziness.--nauseous.--bad headaches.--body temperature- always seems to be hot.--shaking of the body, especially arms, hands, and face.--says her food feels like it is not going down - staying in throat or on top of chest.Mike

[Guest guest]

blurred vision can be a result of vitamin A deficiency.

-------------- Original message --------------

4/28/07Hi,Our adult daughter has recently been diagnosed with PSC, although it is described as "not a classic case." She was hospitalized for several days while tests were run, had a tube protracting from her body, numerous procedures (e.g., ERCP), and currently has a stent. We are told her liver is in pretty good shape and she is not currently in need for a transplant.PSC and its affects are new to us, and we are still trying to learn more about the disease and its symptoms. I am listing below some of the symptoms she is experiencing and would be interested in receiving feedback from the group on whether, in your experiences, these are common to, or associated with, PSC. Thank you in advance for any feedback you can provide.--itching - while we know this is a symptom, does anyone have any suggestions on how to provide relief from this. She is currently taking Benadryl?--difficulty walking, e

specially lifting her feet. Has trouble maintaining her balance.--strong back pain.--arms and fingers and fingertips tingle.--blurred vision, hard to read (one of favorite things to do).--dizziness.--nauseous.--bad headaches.--body temperature- always seems to be hot.--shaking of the body, especially arms, hands, and face.--says her food feels like it is not going down - staying in throat or on top of chest.Mike

[Guest guest]

<Mike,

Some of the symptoms sound like they may be drug interactions. Is she taking

any medicine?

-Marie

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