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Registered: 01-22-2021
Posts: 2
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Recently, I was admitted to the hospital for observation after experiencing tightness in my chest and after feeling like I would pass out during a regular workout at the gym. Numerous cardio tests showed I didn't have a heart issue but my blood work came back with CK levels over 900. They recommended I see a neuro-muscular specialist after reviewing my other symptoms. Upon doing a bit of research, I have determined that I have a great deal of symptoms that seem consistent with this disease and I am on the road to further discovery work to find out if I truly do have this medical issue. I am in the process of trying to find the right specialist to do the necessary diagnostic tests but I thought I would use this great forum to gain some additional information. In addition to the tightness in my chest I also have eye tremors, numbness in my lips and other parts of my face periodically, burning mouth syndrome, droopy eyelids, low testosterone (for over 10 years and I take weekly injections), Fatigue, Difficulty with urination, weak grip, slight hand tremor (hard to see but I can feel it), a weakness in my legs after long walks, a shaky feeling most days (like I have low blood sugar but I don't) and I had gynecomastia as a teen. It would be helpful to gain an understanding of how others view these symptoms as I continue to find the right path foward within the medical community.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 183
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My guess based on your low testosterone is you don't have Kennedy's disease. KD is a mutation of the androgen receptor gene which causes testosterone insensitivity which typically results in higher testosterone than normal. That's by no means definitive, my own T was normal a few years ago when I was in very poor health but as I've fixed my health through diet and exercise my T has been rising. I've attached my most recent test results and I expect my next test in a couple months or so will be much higher.

There is a genetic test for KD and if your doc thinks it is a possibility they should order the test for you and then you will know for certain. If it is KD you should probably skip the testosterone supplementation as it is believed that testosterone is essential to the disease pathology. Some are taking testosterone blocking drugs to try and slow the disease. My opinion is that when one is in excellent health testosterone is less of a problem and thus few of us with KD had much if any symptoms as young adults when testosterone tends to be high. Myself the only problem I'm having with my rising testosterone is feeling like a teenager again with the distraction of high libido as in all other ways my neurological symptoms are fading and I'm regaining strength, physical fitness and muscle mass at 56.

testosterone test result
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 160
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A common strong indicator for SBMA is if you have relatives with similar symptoms on your mother's side of the family tree. Strong enough at least to justify the genetic test to rule in/out.

Keep a logbook on your diagnostic journey.


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email:rheitzman at gmail
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 160
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Note that high Dihydrotestosterone (DHT) is the hormone suspected of contributing to SBMA. In my case; I had elevated DHT, took Avodart (dutasteride), reduced DHT, and had a significant reduction in the severity of some symptoms for a long while. My SBMA still progressed. Clinical studies were inconclusive.

Going high T may be the better path as Todd(56) noted above. I(72) went on Avodart in my early 60's.)

This message has been edited. Last edited by: Bob Heitzman,


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email:rheitzman at gmail
Registered: 01-22-2021
Posts: 2
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Thank you both for the informative responses. I will take your inputs and they will help me formulate plans regarding my diagnostic journey.
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Kennedy's Disease Association
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