Newly Diagnosed

[Renate B]

Hi Everyone,  I have recently been diagnosed with ADPLD.  I am a 54 yo, female in menopause and believe I probably missed earlier signs as symptoms of menopause.  

For the last 5 days I have had excruciating back pain on the right side.  I have a visible lump just to the right of my spine about mid - back.  Has anyone ever experienced something similar?  Laying flat is about the only thing that provides any relief at the moment.  And I am following up with my PCP about this tomorrow, she just doesn't have a lot of info on the disease.

Anyone else experience hair loss and thinning with the condition? Suggestions?

Has anyone added tumeric into their diet with a positive response to help with some of the bloating?

Thanks so much, Renate 

[Diane Smith]

Dear Renate

 I took turmeric for awhile. Like the fresh root better. A diet that helped me with PLD.  http://www.pkdiet.com/diet_liver.php

Sent from my awesome Gold iPhone 12

~Diane

On Mar 11, 2021, at 10:56 AM, Renate B <renat...@gmail.com> wrote:

Hi Everyone,  I have recently been diagnosed with ADPLD.  I am a 54 yo, female in menopause and believe I probably missed earlier signs as symptoms of menopause.  

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[Diane Smith]

Have you gone to the ER for an ultrasound of the spot? 

If it were me I would do this. 

Sent from my awesome Gold iPhone 12

~Diane

On Mar 11, 2021, at 11:08 AM, Diane Smith <smith...@mac.com> wrote:

Dear Renate

[Mark de Buisseret]

I have hair thinning but this could be because of my dialysis treatment. In order to thin my thick blood I have heparin rather than the gentler tinzaparin but a side effect is that your hair goes. If i didnt have that the machine clogs up and i dont get any dialysis done.

I have visible cysts front and back off kidneys and sometimes liver too. In time mine rupture.

Mark

On Thursday, 11 March 2021 Renate B <polycysticl...@googlegroups.com> wrote:

[Diane]

I had lost hair (it would come out in clumps) Until i went out into the sun I had the sun on top of my head.

~Diane

On Mar 11, 2021, at 1:06 PM, 'Mark de Buisseret' via PLD Polycystic Liver Disease <polycysticl...@googlegroups.com> wrote:

I have hair thinning but this could be because of my dialysis treatment. In order to thin my thick blood I have heparin rather than the gentler tinzaparin but a side effect is that your hair goes. If i didnt have that the machine clogs up and i dont get any dialysis done.

of I have visible cysts front and back off kidneys and sometimes liver too. In time mine rupture.

Mark

On Thursday, 11 March 2021 Renate B <polycysticl...@googlegroups.com> wrote:

Hi Everyone,  I have recently been diagnosed with ADPLD.  I am a 54 yo, female in menopause and believe I probably missed earlier signs as symptoms of menopause.  

For the last 5 days I have had excruciating back pain on the right side.  I have a visible lump just to the right of my spine about mid - back.  Has anyone ever experienced something similar?  Laying flat is about the only thing that provides any relief at the moment.  And I am following up with my PCP about this tomorrow, she just doesn't have a lot of info on the disease.

Anyone else experience hair loss and thinning with the condition? Suggestions?

Has anyone added tumeric into their diet with a positive response to help with some of the bloating?

Thanks so much, Renate 

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[Renate B]

My PCP is ordering an ultrasound of the lump.  She doesn't believe its related to the the PLD, but wants to be cautious.  

[Mark de Buisseret]

It could be a cyst. I see mine. I also see the passage of food through my gut. During dialysis sessions my belt goes lose so when you get up you have to readjust it before everyone gets an unwelcome show!

Mark

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