Man I am so sorry, I feel for you. Your sides are similar to mine shrinkage, fatigue ect… that’s horrible how the docs don’t believe you, I’m hoping the upcoming Baylor study will show somthing so you can prove those doctors wrong. Hang in brother!
Have you gotten any recent blood work done?
is your cognitive impairment away ?
Hi @kan,
Thanks for sharing this update. I am sorry to read your story. I also unfortunately have been devastated neurologically and physically by this condition.
Yes, I would agree - the severe end of the spectrum often gives great insight into diseases with variable phenotypes in general. This is quite evident in trinucleotide repeat disorders which feature the genetic phenomenon of anticipation. Myotonic dystrophy (DM1) is a very interesting example.
Firstly, have you shown your parents any recent publications on PFS? Recently there have been a few good literature reviews with clear conclusions regarding the existence of the disease, notably Khera and Traish’s. If you would like I can provide links to the abstracts.
Secondly, have you received your invite via email to participate in our survey? It is a very significant project and it would be great if you could take it. You have received an invite via email, but if you cannot find it please follow the steps in the first section of the FAQ topic and let me know when you have done so. I’ll issue a reminder.
Lastly, do you have your medical findings well documented?
Hi @axolotl, I haven’t showed my parents the recent literature reviews, I would appreciate if you sent me the links. Thanks.
In the past I showed what was published then, but they are very skeptical.
I haven’t received the email to participate in the survey, maybe because I have hotmail, I think there were some problems in the last emails, but I can’t recall it well. I’ll follow the instructions of the FAQ topic.
Regarding medical findings I have the results of the doppler that I did just some weeks/months after stopping finasteride and zoloft. The images clearly show fibrosis, etc. At that moment the only thing that I had tried after the first crash was ritalin.
I also have the report from the doctor who did the doppler, he talks about fibrosis, microcalcifications, and significant erectile dysfunction as a consequence of penile atheroesclerosis. I will try to upload it soon.
I did also a doppler showing a small calcification in my prostate, but the doctor told me not to worry about that. I still have the results.
I think you would stand to benefit from losing weight. At least to 70 kg. I think it will help you so much.
Excellent, thank you - let me know when you’ve followed the instructions and i’ll send a reminder invite for the survey via the system.
Have you had a creatine kinase serum blood test during a period of muscle loss, or had at any point recently an electromyographic test (EMG) noting any denervation?
Please do stay in touch. Below are two literature reviews as requested:
Thanks for the links @axolotl.
I’ve just followed the instructions of the FAQ topic and confirmed the subscription.
I haven’t done the tests you mention, but I will probably do them as soon as I can.
I still haven’t received any e-mail regarding the survey.
Thank you for letting me know - have sent you a PM.
I have a visit with my doctor next week to talk about this.
Just curious, has any member of the forum with muscle wastage done these tests?
I’m interested in this also, and I am very sorry to hear about your story Kan. I have been significantly affected by this drug as well, physically and mentally. I am 5 months since taking a single pill and still have hopes that this is not permanent.
If you don’t take anything you will improve at about 10-14 months after stoping finasteride, especially regarding mental sides.
If you start trying drugs to improve your situation, you will risk worsening even more. Especially if you take drugs that affect testosterone in some way.
At least, that has been my experience. Take care.
I haven’t taken anything to try and re-balance my hormones, no antidepressants or anything for cognitive symptoms. By improvement, are you saying that your muscle wastage, erectile dysfunction, any cognitive issues were not permanent? What about difficulties with sleep, like not getting restorative, deep sleep? Any input on this is much appreciated man.
Erectile dysfunction was permanent for me after my second crash, but cognitive function, muscle wastage and sleep improved (but have now worsened again after this last crash).
All my crashes have been a consequence of different drugs.
For me the most important thing is being mentally well. Before this crash, since my mind was back to “normal”, I could have an acceptable life because I wasn’t depressed anymore.
What were some of the drugs which caused you to crash? I read where you also experienced crashes after ejaculating, or having an orgasm. Does this still occur? I have noticed that after I have sex, I am significantly more disoriented and have worse brain fog. I am just really hoping, at the very least, my sleep and muscle wastage improve. As of now, do you still have any cognitive issues? Any visual/perceptual issues or any haziness? Are you able to get deep rest?
Thank you for the responses.
Orgasm makes things worse, but I wouldn’t call that a crash, because it is temporary.
I have only crashed after taking drugs (for me the crash usually happens in the first orgasm after taking the drug, but I don’t attribute the crash to the orgasm but to the drug)
The drugs that have made me crash are all quoted in my story (antidepressants, progesterone, etc.).
I am having some cognitive problems but you need to bear in mind that I crashed just three months ago. Before that, I had no depression, no anxiety, and I slept well. These are the things that improve the most with time.
So your main advice at this point is to refrain from taking any type of hormone-altering drug and just wait? What about diet, were you sensitive to any foods, did you try juice feasting, fasting, etc? What has been your experience with exercising, such as lifting weights or running?
My advice would be to be really careful with drugs, exactly. Also, not masturbating too much.
Regarding lifting weights, it has also brought me problems, so I stoped lifting a long time ago. But I am a sever case. Lifting weights raises testosterone, which is something that in bad cases of PFS can be dangerous.
So, even though I understand that you probably are in a situation in which you feel you need to try different things, I would recommend to wait some more months and see if your body and mind get better.
Also,try to socialize and focus on other things. I know it is really difficult, but it is really important.
I’ve lifted weights a long time, and now I am pretty much watching all of my hard work go to shit. I am losing muscle no matter what I do. I eat healthy and stay exercising. I have had essential bloodwork done, but not bioavailable T checked. I mean, is there anything I can do here besides wait? going to the gym has always been an outlet for me, and now this fucking condition has taken even that from me. What kinds of problems did lifting weights have for you? How do I know if I should lay off or not?
What happens when you experience new crashes, is it like a bad and slow fluctation of your symptoms+ new occuring symptoms or is it like a one day instant noticable changes?