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joannejames

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I am so glad I found this forum. But I am a bit embarrassed to ask a very senstive question. Maybe I should ask it generally as not to make anyone feel awkward. My boyfriend who is 41 is in the process of being diagnosed, ALS was one of the diseases they discussed with him. He has felt tired, muscle aches, weakness, twitches in his legs. He is being scheduled for an MRI, and a bunch of other tests to try to figure out what is wrong. I have done some reading about ALS, and have read some of the information here. Can anyone tell me if impotence is a symptom, or has any one heard that it is.
 

Mike27

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No need to be embarassed, Joanne! That's a very important question and one that many newly diagnosed wonder.

Short answer? No, impotence is not a symptom of ALS. I had my two children (the old fashioned way) after my diagnosis. We wanted kids, had long talks about pros and cons, and decided to live our lives as per normal... per se.

There are MANY diseases that mimic ALS so be sure! Get many opinions.

Hope this answer helped! Come back and tell us how things are going.

Cheers!
 

Al

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I've read quite a bit on the subject and impotence doesn't come up as a problem. The worst thing is the other muscles wasting so you don't have the stamina you had. Some changes in positioning may have to be made so the muscles don't cramp at awkward times. Cramping is bad sometimes but can be worse with that kind of exertion. Experiment and find out what works for you. Al.
 

Carol Deboer

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Hi there Joanne,

Never was a problem here. Henry and his "you know what" worked just fine. As Al said, you learn to use different positions for comfort, but believe me, it was not a symptom or a related casualty of als. One of the things that kept him going and going actually. Wow, that is personal isn't it? I cannot beleive I am even talking about it, but , you asked ! Good luck to you both. Keep us posted.

Stay Strong. Carol
 

Patsy

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You don't have to be worried about asking anything. From my past experience in Urology and sexual dysfunction, ALS doesn't cause impotence. There are many causes of impotence but he could be having a lot of psychological stress that can be the cause for the moment and could resolve on its own, because of the? ALS diagnosis possibility. The urologist used to say "95% between your ears/psychological and 5% physiological "! After the diagnosis of his neurological condition is determined and the impotence problem is still present, I would suggest that you get him assessed by a sexual dysfunction/urologist.
Patsy
 

joannejames

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I appreciate all who answered the question. We don't live in the same city, so it is difficult to assess what is really going on. The doctors are looking at a variety of illnesses. Maybe it is the stress, from work and family interference. He has been feeling unwell for quite some time, maybe it is part of it. Carol, as all of you seem like nice people, and you made me laugh. Thank you for that
 

me

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Carol - and here we thought juicing was what kept Henry so healthy for so long! Melissa
 

Theresa2004

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oh, my, sounds as if Joanne created an interesting topic. Good one Melissa, I was cracking up laughing and thank you Carol for you candor.
Seriously, I think Joanne had a legitimate question and concern. I am amazed at the honest responses by this group as I read them to a private and senstive subject. Goes to show if anyone is uncomfortable and embarrased as Joanne was, there is support.
I suppose there could be a discussion about positions, but, we would find ourselves bumped off of this site for inappropriate behaviour.
To Joanne, this is an informative and fun forum most of the time, any questions asked are answered. If we have some one liners to enhance the experience, it is in kindness, and the use of laughter to replace the tears.
Keep us informed as you may want to and I hope your boyfriends diagnosis is not ALS.
Thank you for coming to us with your question. You will never meet such a diverse and kind hearted group of people.
 

Timshelper

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Hi Joanne,
In most cases impotence is caused by stress or traumatic experiences an individual is going through in their lifes. I would think right now your boyfreind has a lot on his mind right now. Without sounding like Dr Ruth if your boyfriend is waking up in the morning and so is his manhood there is a good chance he is not impotent you can check this out by doing the rubber band test if the rubber band expands in the morning it is a very good sign. I only know this because I used to work for a Urologist and this is one of the tests they would try before looking for any physical problems. In this case instead of your boyfeind using his little head to think with like most men he is using his big head which in time and after proper diagnosis I'm sure it will be full speed ahead. (can I say that?) Best of luck to both of you I know its such a hard blow when someone who is in their prime of live has something like this happen to them, it is devastating for everyone. Please keep us posted.
Kim
ALS About Loving Someone
 

Patsy

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Hi Kim;
A rubber band, ouch! I would think that it would constrict the vascular blood flow? What if the patient slept through the expansion of the rubber band, he would miss it. Must be a new kind of rubber band for this kind of test, as I have been out of the urology nursing for 15 years.
The urologist/clinic that I worked for at Sunnybrook; used a roll stamps to quantify if there was a night time/morning erection. The strip of stamps would be wrapped around the shaft of the penis, so as to not cut off the circulation and if the strip of stamps comes apart at the perforated areas between the stamps; it usually meant that the mechanics of the erection still worked. This is a cheap and easy self test that can be done at home, by the patient.
Patsy
 

joannejames

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All of you have been wonderful. Part of me is blushing. But I suppose this is associated with the learning experience and posing a question I never noticed brought up before.
As long as we don't get into kinky sex, the moderator will permit this discussion. I am glad that there are experienced medics here to help.
The best I can say is the plumbing kinda works, but, it isn't strong. It is sporatic. And this has been an issue for more then a year. Then the weakness, and the rest of weird symptoms. Yes, stress can be an issue. I will have to wait until he sees his doctors some more.
 

Al

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Hope you ladies have noticed that there is not much response from the guys on this one. Most guys are not inclined to discuss their manhood problems with other guys let alone post them to a forum for all to see. This can be a difficult time for a man. Not because he has lost the interest or the ability to partake of the pleasures of his wife or lover but because of the physical limitations it imposes on us. If you check the Living with ALS binder it says a satisfying sex life can be enjoyed for a long time by the man if he is the one with ALS. Not much has been written about women. I would expect that the pressure of someone above you may be uncomfortable. Gentleness is the key word. Lee says I'm not allowed to say this but from the research I've read I'll still enjoy a hummer on my death bed. IF I can find someone to do it. LOLOL
 

Timshelper

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Dear Patsy,
I never said this Urologist was a gentle man but thats how most of our patients described his device and this was about 10 years ago. He has left the country since then. Al did you say Hummer thats a really big car isnt it kind of like a tank? LOL
Kim
ALS About Loivng Someone
 

Al

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Yes it is and I always say Tank You.!
 

TBear

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... I suppose you can count Lee out now that the cat is out of the bag! So I guess if your looking for a Hummer on your death bed Al you'd better get a bigger bed... probably have to move into the garage!

CHeers
T (who has been remarkably silent on this string)
 
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