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Has anyone been diagnosed with pseudopheochromocytoma
Diabetes & Endocrine System | Last Active: Nov 22 6:20pm | Replies (28)Comment receiving replies
I found this post searching for support groups for pseudopheochromocytoma. I first had an episode in 2022, about 35 days from the onset of Covid. My nephrologist told me they were seeing a trend of people presenting to the ER 30 days plus or minus 5 days, with sudden severe hypertensive crisis. He brought up pseudo at the time, after pheo was ruled out. I did well for two years on my medications, with few episodes. Then Covid hit again this past October, and the episodes got more frequent and more severe. I’m now on multiple mediations to control it, but continue to have episodes at least weekly. It is everything you all have said. Terrifying. Debilitating. I am looking for more information and support. I wonder sometimes how I can go on like this, and for how long I can go on like this. It has changed my life.
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@suziq64
I also found this site looking for help or support. I first experienced these type of symptoms in October 2012. I had testing with negative results, did a lot of research but eventually resigned myself to it. I was diagnosed with something called hyper beta-adrenergic sensitivity syndrome by an endocrinologist. I was never diagnosed with pseudopheo but felt that was what I had. I live in an area without specialists that would be able to diagnose something like that. Eventually over a couple of years with beta blocker and a benzo things got better and stopped for quite a while. Then came covid in October 2021 and I had same symptoms, only worse, along with others and was diagnosed with long covid. I have dealt with it on and off since then and recently had a bad episode. It has dawned on me now with a severe episode that the problems I have had the last 4 years is a reactivation & has attacked my nervous system. Does anyone know where to find a doctor knowledgable about this type of treatment and condition? What medicines are others taking? It's really stressful to try to think about your health constantly.
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Hi Suzi. I'm sorry you're going through this. What meds are you on? Are they treating this like it is pseudo, does you're primary care doctor consider it pseudo, or was it only something mentioned by the nephrologist? Are you on an antidepressant?