Anyone seen this college dropout bedridden for 11 years cured self

I know this isn’t dealing with pfs but very interesting story

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That was a pretty good read. Strange that they use a black and white photo with a story that began in 1999. :slight_smile:

Doctors concerned about the ethics of performing a novel surgery. Insurance companies not wanting to pay for treatment of an unproven condition. Scientists skeptical of a condition not in the textbooks.

All sounds familiar.

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Yes very familiar

I’ve long thought PFS was just some branch of autonomic dysfunction. might even be something not in the medical literature. our symptoms vary widely enough that it could fall under the umbrella of many different autonomic diseases and it explains why there are so many different levels and symptoms of this syndrome, why some get better, some don’t, why we all have similar stories but different issues.

this has long explained my symptoms and it’s usually what I consider this disease to be. one of the primary symptoms of pure autonomic failure is erectile dysfunction. read more into it, it’s not very well discussed or known by doctors, but there is literature that has helped me.

I’ve recovered enough that I’m no longer in a debilitating condition, just maintaining, as we likely all will for the rest of our lives. One thing that I’m not posting evidence for right now, bur that I believe, is that the ED caused by this disease is directly related to both the neuropathy caused by circulation issues and the circulation issues themselves, which is why many faint so much at the beginning of all of this.