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Author Topic: One or more parents with inflammatory conditions?  (Read 1331 times)

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samsung

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One or more parents with inflammatory conditions?
« on: June 16, 2019, 06:48:25 PM »

Not sure where to gather this information into one place, but here is my thinking:

Peyronie's is linked to raynaud's, dupuytrens, etc. And each of those is linked to other things like scleroderma and lupus. In other words, systemic inflammatory or other autoimmune thing that attacks the body in various places.

My father does not have peyronie's. But my mother has Chrohn's disease.

Is there a way to tabulate a large number of members and detail out other autoimmune diseases they might have along with direct relations as well? This info would surely be of interest.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

JohnnyDoe

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Re: One or more parents with inflammatory conditions?
« Reply #1 on: June 16, 2019, 08:40:18 PM »

As far as I know, none of my direct family members have/had anything you mentioned.
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samsung

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Re: One or more parents with inflammatory conditions?
« Reply #2 on: June 16, 2019, 09:42:15 PM »

Would be interesting to have site creator or someone put together some sort of survey so an exhaustive amount of data could be collected for future use. Although privacy concerns and it being self reported I can see would be an issue.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

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Re: One or more parents with inflammatory conditions?
« Reply #3 on: June 16, 2019, 09:43:22 PM »

Have everyone get a blood test, compare c reactive proteins, anti nuclear antibodies, etc.

I guarantee there are a huge amount of commonalities.
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45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

JohnnyDoe

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Re: One or more parents with inflammatory conditions?
« Reply #4 on: June 17, 2019, 08:51:52 PM »

But there are all these trials for new treatments, don't they do these type of tests, surveys?
Also I asked my Uro for a blood test and was denied...

It would be nice if the forum could be updated into something more modern. Posts with likes, top posts, visual timelines/diaries, visual stats (e.g which treatments work, for how many people, how long does it take), etc. At the moment, we have to rely on search and digging through threads.

I guess somebody would need to get funding for such a change.
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Dressa

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Re: One or more parents with inflammatory conditions?
« Reply #5 on: June 23, 2019, 08:06:00 PM »

I have ehlers danlos syndrome and peyronies. I guess they are linked.
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Bubba dawg

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Re: One or more parents with inflammatory conditions?
« Reply #6 on: June 24, 2019, 04:44:18 AM »

Just read about EDS. That is some more serious disease. My family has a history of heart disease, cancer, gout and Diabetes. Nobody has ever mentioned peyrones
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
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