Collect evidences

General Discussion
#1

I dont know if a cure will be found even in the next 15 years. But one day pfs will be recognised.
To this day, you need to get with proofs. You need to have penis doopler, you neet to have hormonal test, documented meeting with urolugist, because when they gonna sue merck you probably be better, or well enough to dont care and you wont be able to prove the hell you went through.
Merck is probably aware to the persistent side effects and they just gonna milk the cow until the law suit, i bet they already have defence strategey and they are 1000 steps ahead.

Collect as much as you can.

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#3

You need to fill out a member story.

1 Like
#4

If that happened it’d be almost guaranteed to be written off as the actions of a mentally ill person. The dead would get no justice we’d be labelled as part of a crazy group.

Please think about the consequences of what you may be seen to be recommending.

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#5

What makes you think Merck have the answer to the problem of PFS?

#6

That was meant to be a joke actually. Like an exaggerated satire. I know.

#7

Not many laughs. As such a mild case it might be easier for you to make a joke out of this, I suppose.

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#9

Im sure they dont have the answer because they would be fixing it in a new series of pills. Im just sure they are aware of the syndrom and preaper themselvs for the law suits.

2 Likes
#10

The admins touched on areas of investigation patients can pursue depending on their symptoms

There are many avenues by which to pursue immediate clinical evaluation of PFS patients beyond appropriate basic endocrinological and urological evaluation, and these should account for the specific symptoms of individual patients. Serum creatine-kinase levels may be worthy of assessment during the post-withdrawal crash period or subsequent periods of muscle wasting, as some patients have reported elevated findings. Histological study of affected muscles, including the markedly AR-sensitive perineal muscles, would allow consideration of signs of atrophy and myogenic defects. Area calculation of the bulbocavernosus via ultrasonography has been suggested as a measure of decreased end-organ activity of androgens ​(Gupta et al., 2017)​, and this could potentially be a low-cost and non-invasive investigation in PFS patients who have experienced atrophic changes. Electromyography to assess abnormalities including signs of perineal muscle denervation may also be worthwhile. MRI protocols including localizer scans, T1-weighted imaging and 2-point Dixon sequences have proven a useful measure of muscle appearance and diffuse involvement in SBMA and could be useful in the phenotype profiling of PFS in patients with broad muscle atrophy. Dual-energy X-ray absorptiometry of bone including lumbar/thoracic spine, femur and sites of complaint, along with serum C-telopeptide testing to assess bone mineral density and trabecular bone health may be worthwhile in patients with bone-related symptomatology and who report structural alteration. Lipid profiling of patient cohorts would additionally provide insight into metabolic dysregulation.

#11

Yeah that makes sense to be honest. They’d jump at the chance to make a new set of expensive pills …but then I feel they’d be too proud to admit a huge mistake or a huge cover up has been made