VoyForums
[ Show ]
Support VoyForums
[ Shrink ]
VoyForums Announcement: Programming and providing support for this service has been a labor of love since 1997. We are one of the few services online who values our users' privacy, and have never sold your information. We have even fought hard to defend your privacy in legal cases; however, we've done it with almost no financial support -- paying out of pocket to continue providing the service. Due to the issues imposed on us by advertisers, we also stopped hosting most ads on the forums many years ago. We hope you appreciate our efforts.

Show your support by donating any amount. (Note: We are still technically a for-profit company, so your contribution is not tax-deductible.) PayPal Acct: Feedback:

Donate to VoyForums (PayPal):

[ Login ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, [2], 3, 4 ]

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Date Posted: 16:42:42 08/27/07 Mon
Author: TIN
Subject: Re: porphyria
In reply to: Vancomycin 's message, "Re: porphyria" on 20:03:21 08/19/07 Sun

>>>"顯示肝膽系統出現阻塞(最大機會係膽石﹐但寄生蟲/autoimmune hepatitis都可以)。你既肝功能慢慢恢復中。"......................

係羅,...所以醫生開了膽管藥給我(Ursodeoxycholic acid(URSOFALK) capsule)
---想問我係未以後要keep 住食/無事就不用食???....
cholestatic 將來發生機會係未很大?

>>>"而家最主要係要分開到底你淨係有porphyria定有underlying hepatic pathology...呢方面醫生會同你講過。"............................

quato from wiki
"Underlying liver disease
Some liver diseases may cause porphyria even in the absence of genetic predisposition. These include hemochromatosis and hepatitis C. Treatment of iron overload may be required."

我應該淨係只有porphyria
從醫生那裡我所理解/知道 , Good past health, 我所有的問題eg, liver failure/abdomen pain等都是由最基本的問題 - 'porphyria'導致的, maybe due to excess deposition of protoporphyin
-我有 porphyria genetic predisposition
-無任何hepatitis, 99/00年 有打過 hepatitis B 針


>>>"如果有其他肝病需要醫治就切勿延醫"...............
我就怕自己會有因自己的porphyria令到有其他肝病, 其實可以點做/預防?
最有效/有用 定期驗血, 會否走溜眼?


>>>"因為porphyria本身除了身體不適外(主要為不能解釋肚痛､神經問題､高血壓､精神方面問題如憂鬱症等)".................

你說得沒錯,這些資料我都看過,很不幸的是, EPP中最罕見的 symptoms 我有...."in rare cases, to serious liver disease"

不能解釋肚痛--- 起初痛只以為胃痛.....入院check/stay; > over 3,4weeks, 甚麼都不是, 最後先至check 到係porphyria
精神方面問題如憂鬱症等' ---我自覺有這問題,還覺得是和porphyria有關, 雖然有睇psycho 可惜感到佢不太幫到我.....


>>>"希望你能提供多D資料﹐如ultrasound/CT/MRI report同埋唔知有冇驗過autoantibody...因為有時autoimmune disease個presentation會似hepatits或者porphyria. 如果你有的話可否打埋出o黎?"

detail 的check test我不太記得/清楚, 因當時一切太突如奇來, 好多事都記得不好
加上之前對它的認識是零, 很多資料都是我出院後, 後期身體好了才有精神/心情 去了解的

-記得check urine/faeces 中有porphyria
-blood 中都有 porphyria ........要特別去specific lab 到test, 同要抽後要即時用錫紙封好sample to avoid sunlight
-DNA genes 有porphyria gene.......(not sure how eaxactly is it), my parents both have 1 recessive gene
mine;get a pair of recessive genes(但不太肯定自己係recessive/dominant)
醫生仲話我勁過 mark 6, 因為人有1 porphyria recessive gene已很難/少見, 加上父母各一, 再難..
offspring 有曬一對 就更難上加難.........另外我的sisters 都有 1 recessive gene
只是我萬中無一的中曬 整對

besides,
我無任何hepatitis, 2000年打了 hepatitis B 針
family members all have hep B (esp from parents)
胃鏡曾照過, 驚有 靜脈曲張,但result只係 少少擦損
CT照過,但report 我無得睇,醫生只輕輕帶過,說ok/無嘜野(應該都係abdomen大了)
USG abdonmen: Hepatomegaly measured 20.7cm at mid-clavicular line. Its echotexture is within normal limits. No focal hepatic lesion seen.
Spleen is slightly enlarged

besides, in my discharge note
it wrote:
diagonsis : Hereditary erythropoietic porphyria (EPP) (277.1)


>>>要留意飲食(盡量食高碳水化合物食物)....................
應該是如何??可唔可以講多些相關資料


<a rel=nofollow target=_blank href="http://www.abbott.com.hk/nutri/nutri_prdinfo.htm">http://www.abbott.com.hk/nutri/nutri_prdinfo.htm</a>
<a rel=nofollow target=_blank href="http://www.nutricia-clinical-care.co.uk/asp/show_subject.asp?brand_id=13&market_id=4&lng_id=1&lng2_id=1&id=18503">http://www.nutricia-clinical-care.co.uk/asp/show_subject.asp?brand_id=13&market_id=4&lng_id=1&lng2_id=1&id=18503</a>
美國雅培- 皇牌加營素 ENSURE (384kcal/100g)
nutricia- polycal powder (431kcal/100g)

這是在我身體最差時...腹痛得不能進食/無食慾時, 醫生開給的
如果我keep 用這些,會唔會over得太多....
當然我知道要適量的使用, 但佢好似太多的能量(kcal)
但我一直都是比較瘦,一般是125磅, 1.78m
但最壞時的瘦多10多磅有多(Dec/2006).......現在太約120磅到

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

  • Re: porphyria -- TIN, 16:55:34 08/27/07 Mon
  • Re: porphyria -- Vancomycin, 20:27:01 09/08/07 Sat
    [ Contact Forum Admin ]

    Forum timezone: GMT+0
    VF Version: 3.00b, ConfDB:
    Before posting please read our privacy policy.
    VoyForums(tm) is a Free Service from Voyager Info-Systems.
    Copyright © 1998-2019 Voyager Info-Systems. All Rights Reserved.