How’s it going? What treatment are you having?
@Greek at the moment no treatment. he only sent me to do routine analysis and study to see the possible silent mutacioons in the CAG triplets. mentioned in the study (blood test)
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I went to the beginning of March and he told me exactly the same thing. please when he indicate a treatment or you have the result of the mutations cag, share it in this thread
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doing a cag mutation study is too expensive for me and the only thing I would confirm is that I suffer spf. If want to do it, any result greater than 24 repetitions indicates that you have the syndrome.
@Greek @Argentino1984 Me dio 22 repeticiones ( es considerable entre 22 y 25 repeticiones o más ) según lo que explicó el urólogo. (Más allá de eso entre 11 y 33 es considerado dentro del rango de normalidad).
Gracias por responder, te dio algun tipo de terapia para mitigar los efectos secundarios?
Por el momento no hay tratamiento. Solo Tadalafilo diario que en mi caso no hace ninguna diferencia. Saludos. Es importante la terapia para acompañar este síndrome ya que el trauma que genera empeora los síntomas y genera más problemas debido a la ansiedad y estrés. @Argentino1984
A mi me dio lo mismo, con los mismos resultados
Now I am sure that i am on the right track with aromatase inhibition. My symptoms is so similar that, i have no doubts about pfs any more.
I have sequenced my whole exome then whole Genome! I have to find this cag repeats
Te he enviado un msj , saludos
Case 2 sounds exactly like me. Interesting that they attributed his FSH abnormalities to testicular cancer when most of us have low FSH as well. I also took benzodiazepines and they definitely made me worse in the long run
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Case 2’s FSH was found to be very high and they speculated it was to compensate for the loss of one of his testes.
The only altered item found was FSH, which resulted in values of 16 and 21 mU/ml, surely due to the unilateral orchidectomy and the chemo and radiotherapy treatment, with a severe negative impact in his spermatogenesis.
Thank you for clarifying, I thought it meant it was low. His symptoms are all still very similar to mine
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Not sure if this study has been posted here or not but figured I’d post it. One of the patients was given andractim (topical dht) with no benefits
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Me atiendo con ese doctor en argentina. Si ese estudio ya ha sido publicado en esta página anteriormente.
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I see, were you part of this study as well? Or just saw this doctor outside of the study?
No fui parte del estudio. Pero me atiendo con el. No tiene tratamiento actual.
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Hello everyone,
I am Case 1, I cant believe this has been shared here, I havent been active in this forum scince 2015/16, there was nothing else I could do at that time. I tried to re-build my life as I could.
Just to clear a few things, I a am not cured but have improved ALOT, unfortunately I am on serveral medications (HCG, Anastrozole, cialis, vit d, and avoiding endocrine disruptors overall). Also haved crushed a few times in the past years, mainly due to trying new protocols/medicines that backfired.
At first I couldnt find any doctors that belived me, I thing i went to 7 or 8 different doctors before finding the right ones. And they didn believed me straigh away, i had to convice them showing them papers, studies, and empirical evidence (although scarce) to back up what i was saying.
If anyone has any questions I will be glad to answer them.
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