Anyone here living with this disease? Recently found out it runs in my family and I'm waiting for my genetic testing appointment. I will not be surprised by a positive diagnosis as it would explain a lot of my struggles these last 10 years or so with weird cramping and lack of progress and even regression in training.
I had an idea that maybe SARMS could be actually effective to get around the defective AR and it seems there is a patent pending on using MEBP (1-[2-(4-methylphenoxy)ethyl]-2-[(2-phenoxyethyl)sulfanyl]-1H-benzimidazole) for treatment. Does this happen to have a "street name"?
https://www.stjude.org/research/why-st-jude/shared-resources/technology-licensing/technologies/sarm-for-kennedys-disease-sj-18-0012.html
pubmed.ncbi.nlm.nih.gov
Have you come across any studies with alternative synthetic anabolic's being effective? I think I saw mention of Halo being effective in activating the "bad" AR's in some other CAG expansion study for example but I can not find the actual study.
If my results come back positive I'm hoping to locate a doctor that would like to experiment with me. Otherwise I'll probably end up doing it myself. While TRT hasn't been life changing it certainly has greatly improved my QOL these last 6+ years and I'm afraid the first line of treatment will be pulling me off and even trying to use blockers to slow progression.
I had an idea that maybe SARMS could be actually effective to get around the defective AR and it seems there is a patent pending on using MEBP (1-[2-(4-methylphenoxy)ethyl]-2-[(2-phenoxyethyl)sulfanyl]-1H-benzimidazole) for treatment. Does this happen to have a "street name"?
https://www.stjude.org/research/why-st-jude/shared-resources/technology-licensing/technologies/sarm-for-kennedys-disease-sj-18-0012.html
Selective modulation of the androgen receptor AF2 domain rescues degeneration in spinal bulbar muscular atrophy - PubMed
Spinal bulbar muscular atrophy (SBMA) is a motor neuron disease caused by toxic gain of function of the androgen receptor (AR). Previously, we found that co-regulator binding through the activation function-2 (AF2) domain of AR is essential for pathogenesis, suggesting that AF2 may be a...
pubmed.ncbi.nlm.nih.gov
Have you come across any studies with alternative synthetic anabolic's being effective? I think I saw mention of Halo being effective in activating the "bad" AR's in some other CAG expansion study for example but I can not find the actual study.
If my results come back positive I'm hoping to locate a doctor that would like to experiment with me. Otherwise I'll probably end up doing it myself. While TRT hasn't been life changing it certainly has greatly improved my QOL these last 6+ years and I'm afraid the first line of treatment will be pulling me off and even trying to use blockers to slow progression.
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