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25 years old high CPK level
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Registered: 03-26-2015
Posts: 6
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Hello everyone!

This message has been edited. Last edited by: Henry,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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It sounds like you have KD. You can get the genetic test and know for certain.

Progression with KD is highly variable. Age of onset is typically considered to be around 30. A few of us are in pretty desperate shape by 40 and a few are only modestly affected at 80 and there's the entire spectrum in between.

If you are significantly affected at 25 and keep living as you are I'd expect you to be on a faster than normal decline path. Myself I had a brutal decline in my 40s but now after intensive experimentation on myself have found approaches to diet, exercise, sleep, stress management and toxin avoidance that has me feeling great again at 53 with improving strength and performance and a strong reversal of all the common bio-markers of KD. I've got a very long thread on this forum about it which is desperately overdue for an update but you might find something of value in what is already there.
Registered: 03-26-2015
Posts: 6
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Thank you for response

This message has been edited. Last edited by: Henry,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Henry I started getting the shaking and fasciculations in my teens. I didn't start monitoring my CPK until my early 30s and I think the first test was something like 2500. But I had quite a bit of muscle then.

CPK is an indicator of muscle protein breakdown, not muscle loss. If muscle protein uptake and synthesis exceeds breakdown you can gain muscle. My most recent CPK level was roughly 700 at the end of October. Since then I believe I've been gaining somewhere around 0.25 lbs of muscle per week. I'll be getting more testing done later this month to better know how I'm doing.

Muscle use causes damage and will elevate your CPK. But it also triggers repair when you are in a nutrient deprived state and growth when in a nutrient rich state.

The goal is to find the right mix of exercise to promote good repair and growth without causing too much damage. Your capacity for repair and growth depends on the quality of your nutrition and sleep while the damage of exercise is worsened by chronic stress and toxins from things like smoking, chemical exposures, excesses of alcohol and sugar, etc.

KD does have some impact on sexual health but I think other factors like obesity, hyperinsulinemia and hyperglycemia play a bigger role. If you otherwise maintain good health the impact of KD should be modest.
Registered: 03-26-2015
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Thank you Todd

This message has been edited. Last edited by: Henry,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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I find I do best with a lot of low intensity activity such as standing, stretching and walking plus a small amount of very intense activity such as slow weight lifting to failure and short hard sprints biking, swimming, stair climbing, etc. at a level that I can do something daily or every other day alternating activities. When I push too long/hard such that it takes me more than a day or two to recover sufficiently my results suffer. Pick things that you can measure or track, say set a stopwatch for 3 minutes and then count how many stairs you can climb. Keep records and try to find what gives you the best results.
Registered: 08-02-2009
Posts: 206
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Henry asked, "I'm planning to have kids with my fiancée but because of financial factor it won't be possible before my 30s. Will KD affect my sexual ability?" The answer is, it will not affect your sexual ability, but it will affect your fertility, especially as you get older.

This is from the NIH website at https://rarediseases.info.nih....6818/kennedy-disease
quote:
Affected people may also have gynecomastia, testicular atrophy (reduction in size or function of the testes), and reduced fertility as a result of mild androgen insensitivity.

The implications of the lower fertility are complex and you may want to see a reproductive counselor or genetic counselor. Possible ideas are:
  • You may decide to attempt conception earlier in life, rather than later when your fertility is likely to be lower.
  • You may want to preserve your sperm cells in a sperm bank (details on local services can be found easily by a web search).
  • If you decide to attempt conception later in life, and you cannot conceive due to lower fertility at that time, you may want to use a sperm donor.
Again, these issues are complex and you will certainly want to see a genetic counselor if they are important to you. Such a counselor can be found by referral from your doctor, or by a web search in your area.

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Registered: 02-15-2013
Posts: 23
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Hi Henry,

I would just like to add regarding the child factor, you most likely needn't worry. Most men will tell you here that they had no problem having a child naturally. However, if you do run into a problem, there is always IVF, albeit an expensive alternative. And if your sperm is highly affected, there is an extra step that can be taken in IVF called ICSI, where they would take one good sperm and inject it right into the egg. Lastly, from there, they can test the embryos so you have a son, dismissing the possibility of passing KD down to your child. Again, this could be very expensive but there are insurances that will cover some of the cost, especially if there is proven infertility and/or confirmation that a hereditary disease is a factor. You can absolutely be a biological father to a kid, or many kids, thanks to the advancement of medicine these days. The next thing will be a treatment or a cure for all the men here. I have so much faith in what is happening amongst scientists across the world. So much faith. Good luck and come to this forum for whenever you need support!
Location: Brooklyn, NY
Registered: 02-10-2017
Posts: 17
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I really needed to hear your positive words tonight raxel19. Thank you so much.

Henry - best of luck to you. Please know that it is a very slow moving process - I was showing symptoms in my early twenties. I'm 37 now and although slow walking and on stairs am living a relatively normal life.
Registered: 03-26-2015
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Thank you everyone for your positive attitude

This message has been edited. Last edited by: Henry,
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