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Hello everyone. I will summarise my condition as much as possible so as not to make the post too long.
I suffer from ME.MCAS, SFN; POTS; hereditary thrombophilia, pancreas inssuficiency , diabetes 2. And recently, after a lifetime of episodes of pancreatitis since childhood, I was not diagnosed (my parents did not take me to the doctor, they were both narcissists, if anyone finds that strange, narcissists sometimes deny their children medical care and isolate them), and pancreatic insufficiency diagnosed in 2016 by stool tests (low elastase), taking Kreon, I still have major increasing problems with fats.
I tried the ketogenic diet, which led to another major episode of pancreatitis that I feel has permanently affected my pancreas and my type 2 diabetes (my values are worse than before this diet, i still have yellow dhiarrea)
I recently found out by chance that I have the hereditary pancreatitis genePRSS1. This has scared me a lot because (I think this is common among many of us) even though I don't want to live with severe ME and this condition anymore, paradoxically I still want to live and get better, and seeing that I have a 60% chance of developing (if I don't already have it) pancreatic cancer discourages me a lot.
Especially after losing two members of this community to pancreatic cancer at a relatively young age, I wonder if anyone else here is affected by this, or can give me some support or advice on how to cope with this diagnosis, which feels like a death sentence to me.
The doctor also (and take this seriously!) said that there is a very high risk of cancer and that the worst thing I can do is eat fats (I also have familial hypercholesterolemia). That's what I tried with the ketogenic carnivore diet. I regret it so much and i read pancreas damage is premanent. it feels indeed for me like this.
I suffer from ME.MCAS, SFN; POTS; hereditary thrombophilia, pancreas inssuficiency , diabetes 2. And recently, after a lifetime of episodes of pancreatitis since childhood, I was not diagnosed (my parents did not take me to the doctor, they were both narcissists, if anyone finds that strange, narcissists sometimes deny their children medical care and isolate them), and pancreatic insufficiency diagnosed in 2016 by stool tests (low elastase), taking Kreon, I still have major increasing problems with fats.
I tried the ketogenic diet, which led to another major episode of pancreatitis that I feel has permanently affected my pancreas and my type 2 diabetes (my values are worse than before this diet, i still have yellow dhiarrea)
I recently found out by chance that I have the hereditary pancreatitis genePRSS1. This has scared me a lot because (I think this is common among many of us) even though I don't want to live with severe ME and this condition anymore, paradoxically I still want to live and get better, and seeing that I have a 60% chance of developing (if I don't already have it) pancreatic cancer discourages me a lot.
Especially after losing two members of this community to pancreatic cancer at a relatively young age, I wonder if anyone else here is affected by this, or can give me some support or advice on how to cope with this diagnosis, which feels like a death sentence to me.
The doctor also (and take this seriously!) said that there is a very high risk of cancer and that the worst thing I can do is eat fats (I also have familial hypercholesterolemia). That's what I tried with the ketogenic carnivore diet. I regret it so much and i read pancreas damage is premanent. it feels indeed for me like this.