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Old 07-06-2016, 11:04 AM #1
linter linter is offline
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Default Anyone taking testosterone?

I have CIDP -- or PN, depending on the doc -- and have suffered some pretty several muscle atrophy. I read that testosterone can help in such cases, so I got a doctor to give me some, which I inject myself once a week. So far, all I have seen is a better outlook on life, which is normally very gloomy. Also, more energy.

On the downside (I think), for three or four days after giving myself the shot, my feet and legs are flooded with fuzzines like never before. It feels like I'm wearing super thick thigh high woolen socks. I'm not sure how to read this. Could be good, could be bad. Also, my right foot feels like it's freezing. All this pretty much wears off after about a week.

Anyone have any experience with this?

The doctors are no good because no one, near as I can tell, has experience with the crossover of testosterone therapy and PN/CIDP. So, there's no one for me to ask. My neurologist hasn't a clue. The guy who prescribed the testosterone is one of those wellness doctors who I think is pretty much a quack.
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Old 07-06-2016, 07:11 PM #2
Sven Sven is offline
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Default I tried T

I did try to testosterone at about the three or four month point after having peripheral neuropathy. For me it exacerbated my symptoms and felt more burning in my feet and body in general so I didn't continue with it after my first dose.

But I have heard that it supposed to help with chronic pain and depression. But I felt as though the pain that I felt from my PN outweighed any ideas of trying to stay on it and get better.

Hope that helps I wish you luck on getting better and let us know if you file real change in your peripheral neuropathy. This disease is so quirky you have to try a lot of things to try to figure out what gives you relief.

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Old 07-07-2016, 04:14 AM #3
linter linter is offline
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Default

Thanks for weighing in, Sven. I don't have pain associated with my case of CIDP/PN, just numbness and muscle atrophy, etc. Don't know whether I should continue T or not. I mean, could the extra fuzziness in my feet and legs be a sign of nerves trying to feel again? Or, conversely, a sign of increased deadness? Hell if I know.

What a pickle this disease is: so many variations.
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Old 07-07-2016, 09:03 AM #4
MikeK MikeK is offline
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Default

All I remember testosterone doing for me was raising my PSA. It was high enough that they recommended a biopsy of my prostate. After than fun filled procedure I stopped taking it & levels went back down.

I have no memory of any increase in pain or decrease in pain from it.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history.
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