Thanks for the reply. I’ve tried both SSRI( mirtazapine)and ndri( wellbutrin). I had side effects that were very strong in nature with hallucinatintions , erectile dysfunction,weight gain. I wasnt able to continue normal day to day task and stopped after less than a week. I’ve heard that the their can be uncomfortable loading periods with ad meds. I’m wondering how long it took you to get past that initial period before the benefits kicked in?
So a question to the doctors. How do you get a doctor to believe you?
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You present them with literature regarding this condition. Print it out, and show it to them. Tell them your before and after symptoms. Tell them you’re aware it’s a rare syndrome.
I had one doctor tell me he believed me 100%. He says he has no reason to believe I’m full of shit or making things up. But the problem is that in order to diagnose someone with a condition, you need to have certain parameters met. These parameters and diagnostic criteria have not been established for PFS, so there is no way they can properly diagnose/treat us. All my bloodwork looked normal, and he used a caliper to measure my testicular volume. It was also normal. He says that yes, perhaps my balls did change after taking my drug, but I am still considered “normal” on that test.
The best way to get anyone to believe you is by presenting research, and then telling your story.
I did that to my primary doctor and he refused to even read the articles.
Why are you still seeing him?
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Well then fuck that guy. I’m in school to be a certain type of doctor right now, and “evidence based medicine” is what we’re taught to practice. Although there may not be a PFS treatment yet, there is evidence of the condition. Doctor sounds willfully ignorant because he’s too proud of “being wrong” or admitting he doesn’t know something. “Listen to your patient” is what my really good teachers have shouted over and over again, and your doctor is doing a terrible job of that.
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I’ve been meaning to find a new one. It’s just that it’s quite hard to find a new primary doctor. Few are accepting new patients.
Yeah, he doesn’t seem to think insomnia is a big deal either and gives my Dad antibiotics whenever he asks for a little cold.
I bet if you look up his HealthGrade, he has terrible reviews from other patients. Find a new doctor, man. The very least a doctor should do is acknowledge your suffering. Even if there is no treatment, acknowledge the suffering your patient is feeling.
Just for everyone’s info: We have this Doctor & Therapists category, which is intended to help people find useful doctors in their area. It even has a wonderful mapping functionality, which would plot the location of the doctors:
Unfortunately, no one has been making use of this functionality, so the map is empty. Let’s start plotting good doctors, and help @Mercked and others find some medical support. 
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There’s a list of doctors you can add from the PFS foundation website.
As far as I know they’re not vetted. I know at least one person here saw one of those doctors who suggested a course of action that didn’t make much sense and was very expensive to boot.
I saw Mark Gordon in LA but was via Tele-medicine…Expensive is an under statement…
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Vetted? I just assumed the only criteria to be on that list was that they believed PFS was real lol.
There’s no way to treat this disease so if you’re saying they need to have extra special knowledge then that’s unrealistic to demand because nobody in the world knows what to do. If you’re going to one of these doctors the most you can expect is that they’ll prescribe you whatever drugs you wanna try to get better, you’re gonna have to do the research on your own. If they’re charging ridiculous fees and not even doing that then they’re just opportunistic scammers.
Well, I suppose that’s valid.
As to whether it’s helpful to go to a doctor who acknowledges PFS but prescribes expensive treatments that haven’t benefitted anyone else is a other matter.
I guess you pay your money and make your choice.
Evidence-based medicine has become a code word for big pharma sponsored evidence based medicine. According to that medicine, “there is no scientific evidence for the existence of a post finasteride syndrome.” According to that medicine, anecdotal evidence does not count, listening to the patients does not count, and insights informed by theory or just plain old critical thinking do not count. The only thing that counts is pharma-sponsored manipulated and fraudulent clinical trials - the gold standard for evidence.
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Evidence based medicine means prescribing and diagnosing based on statistics. You diagnose based on evidence for a disease, and prescribe based on what will give your patient’s the greatest probability of a successful relapse of symptoms. There is evidence for PFS in literature. It may not be clear cut, defined, or understood, but papers out there address the psychological, cognitive, and sexual symptoms we are facing. This is considered “level 3/4 evidence” which IS a form of evidence, but not a strong one. Anecdotes are even lower forms of evidence, and they are level 5 pieces of evidence. I truly believe that one day, the real mechanism behind our symptoms will be elucidated, via RCTs, or discovering the molecular mechanism which would be the highest form of evidence.
What I’m getting at is that we do have evidence of PFS right now, and doctors should acknowledge that. In the future, I believe we’ll have stronger evidence and doctors WILL acknowledge that.
I know we got absolutely fucked by big pharm, but I don’t think many clinical trials are manipulated. I think the FDA is actually really strict in allowing what gets through to the market. We’re one of the unlucky ones that had side effects that passed through in clinical trials.
Less than 10% of drugs that make it to the human testing stage (and not many drugs make it that far) get to the market.
Are you serious? Where do I even start. Viox, the opioid epidemic, all psychiatric drugs, osteoporosis drugs… I don’t know where to start bursting your bubble. Evidence based medicine has brought life expectancy down two years in a row now in the US.
Prescribing based on statistics? Who is doing the statistics and what is their goal? I hope you know enough about statistics and have played enough with data to understand how easy it is to manipulate statistics. Where are the missing, unpublished clinical trials with negative results?
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Evidence based medicine has brought life expectancy down two years in a row now in the US.
Medicine, sanitation, etc. brought to us via evidence and trials have brought life expectancy from 45 in 1900 to 79 today. Yes, medications have strongly hurt us especially via the opioid epidemic, but they’ve also helped us in numerous ways…
I agree with you that many of these drugs caused terrible side effects or worse. But without any process of going through the FDA to approve a drug, we would all be dying of side effects from companies pumping whatever they want into the market. The FDA drug approval process is not perfect, and it will never stop side effects and other unfortunate events from happening, but I strongly believe it has protected us from things we’ll never know.
And for the record, fuck Merk.
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I am not arguing against medicine (or sanitation) (although I am arguing against most chronically administered drugs with a few exceptions), nor am I arguing against using evidence or statistics. I am arguing that the term evidence based medicine is used to cover up fraudulent and manipulated science and statistics. Every single harmful or withdrawn drug or medical practice was based on “evidence based medicine”.
If I tell you that that safety and effectiveness of Electroconvulsive Therapy is based on good statistical evidence would you believe that or would you trust your intuition that frying the brain destroys higher brain function and would you go online and read the testimonials of tens of thousands of destroyed people?
Medicine should be based on more than statistics. That’s what I am arguing here.
Correction: it is OK if medicine is based on GOOD statistics, but we know that the statistics pharma AND ACADEMIA give us is not good!
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