I never went to a doctor, except for other unrelated issues before and after this.
So did I save time and money by not going?
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Back when I first realized that I might have PFS I tried to tell my primary doctor. I explained what little I had learned about it so far, and he knew nothing about it. I wrote the words " post finasteride syndrome" on a paper to give to him and he actually put his hands up in the air and would not take it.
He had no interest in researching it, instead told me to take the problem to my urologist. My urologist was actually an excellent doctor but he had also never heard of it. He was willing to look into it but unfortunately for me he was relocating out of state the next month. The result was obviously no action. Jim
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@Taw
Actually, the urologist prescibed Proscar. After 3 months I knew something was wrong, and he switched me to another Rx.
It was months later that I had an appointment with my primary, with the results I wrote of. I followed up with my urologist then, to find out he was leaving town. I have no idea where he is, and little doubt he lost interest in PFS the day he left.
I cannot blame my primary for PFS, but he was an example of a Dr. who had no interest in a solution. Jim
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Here’s my experience with doctors:
I first reported my PFS to my company’s “Health Assistant” which is a one-stop shop for medical plan questions. I asked if they’d heard of PFS and if they could refer me to an endocrinologist familiar with it. They said they had (I think that was a lie) but just gave me a list of endos in my area that I could have found myself on our benefits site. I asked them if anyone else had ever reported PFS and they said no. This outfit still calls me once in a while to see how I’m doing.
Next I went to my GP and described my symptoms. I did mention the propecia, might have even suggested it as related but didn’t insist on it. They sent me for bloodwork and then referred me to an endo even though the bloodwork was mostly normal except for low Vit D. They prescribed me a D megadose which I didn’t fill per this site’s horror stories about it.
Around this time I stopped sleeping and reported it to my GP who prescribed a couple different sleep meds which didn’t work great at first but have become more effective since.
I listed my symptoms for the endo and again mentioned the propecia without insisting on it. The endo sent me for another round of bloodwork and after declaring my levels normal referred me back my GP and suggested treatment for anxiety and depression.
My GP then referred me to a rheumatologist but by now I think they were just out of ideas. It was around this time that my fatigue increased to always and I went in person to the GP to report it and this doc prescribed adderall. She also acted very interested in my whole list of symptoms and sent me for another couple rounds of bloodwork. After it all came back normal she basically said she has no idea where to refer me unless future bloodwork reveals something. I have been reporting new symptoms to her on an online portal but she keeps telling me they don’t point to any known thing.
I asked both the endo and the GP what kind of doctor would deal with disruptions downstream of blood biomarkers and both had no answer. Seems the field of medicine that would even begin to address this has yet to be invented or is in such a stage of infancy as to not be on anyone’s radar.
That’s it…I still have the rheumatology appointment pending, I know it’s a dead end but might go anyway just to see what they say.
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跟这些“医生”废话毫无作用，你们知道，在中国看医生要方便的多，我们可以像去沃尔玛一样，随时去医院找不同的医生，我看了十几个医生，你猜怎么着？他们只会让你费口舌去解释你的pfs症状，然后建议你验血，去看精神科或者心理医生，中国的PFS医生居然还给我们的患者开了锯棕榈和ssri.
几个月前我遇见了一个年轻的女医生，她在哈佛受过培训，刚开始她显得不耐烦，但她明显知道什么，她最后说“你还年轻，给身体时间去缓解”，over.
我现在要把验血和看医生的钱都攒起来，以供我们之后的研究和治疗，99.9%的医生跟肉店的屠夫没什么两样，他们只会在手术台上“切割”，“分子生物学？”，“不好意思，我们只会照着说明书开药”。
医生面对我们也只是“往墙上扔狗屎，看看什么能粘住”，一听到“病理机制不明，不知道靶点”，他们的表情就像我的学生碰见了一道不会做的，30分的大题.
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我现在倒是认为，我们问题的关键不在于药物，也不在于医生或我们自己，在于为什么我们会和这些狗屎抗雄药物产生如此恐怖的反应，这是一个科学问题，真正令人气愤的是该负责人的人在这一事件上的冷漠与不负责任。
我从没有想到，医生和药商、监管部门是如此的无作为，他们居然把问题全推给患者，依靠我们这些残疾人资助这些科学研究，真是令人震惊！
我没有贬低那个中国pfs医生的意思，我不知道他对pfs有怎样的看法，他是一个实用主义者，他开锯棕榈的目的是缓解前列腺疼痛，只能说pfs超出了99.9%临床医生的认知范围，他给我们进行了免费的基因测序，似乎是RNA方面的，我也不太清楚，总之这次测序耗时很长，他已经是中国最好的医生了（人品和医术），他承诺会写一篇文章探讨我们的问题，而不是像赶走野狗一样赶走我们。我说的是绝大多数医生的态度。
有个医生叫我找个女朋友试试我萎缩的“小公鸡”能不能用，我只想笑，这不是好玩的，下次我有动力去看医生的话，我会把Mitch的资源包扔给他们，随他们便。
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