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The "silent symptom" that no one wants to talk about...
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deafedteacher posted:
Hi everyone! I am going to broach the taboo topic... sex. Since being diagnosed 6 years ago my libido has dwindled by the day to the current state: I love my husband, I had always enjoyed sex, but these days I just have no interest in sex.

I know all of the suggested stuff like: in the morning you have more energy; take time for the romance first; yada yada yada, blah blah blah...

I really couldn't care less about sex and that makes me feel terrible. Is there anyone else out there who has experienced this? How do you handle it?

Pam
65 Replies |Watch This Discussion | Report This| Share this:The "silent symptom" that no one wants to talk about...Hi everyone! I am going to broach the taboo topic... sex. Since being diagnosed 6 years ago my libido has dwindled by the day to the current state: I love my husband, I had always enjoyed sex, but these days I just have no interest in sex.<br /> <br />I know all of the suggested stuff like: in the morning you have more energy; take time for the romance first; yada yada yada, blah blah blah...<br /> <br />I really couldn't care less about sex and that makes me feel terrible. Is there anyone else out there who has experienced this? How do you handle it?<br /> <br />Pam
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mom6nana8 responded:
I find it very painful. I still am termed to have probable ms for 3 years now an like you I find that now I hate it I do think part of mine is how painful it has become
Report This| Share this:The "silent symptom" that no one wants to talk about...I find it very painful. I still am termed to have probable ms for 3 years now an like you I find that now I hate it I do think part of mine is how painful it has become
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libidoless responded:
I understand completely, deafedteacher! I've got the exact same problem! Why isn't there a "pill" for that? (by the way, I used to be a middle school math teacher - now on "TRS disability" - what a joke!) I'm 52 also...diagnosed 2 years ago. I'm in the CARE-MS study, currently doing Rebif (ugh!) but will get Campath in Dec. Happy Birthday to me!

Marlene
Report This| Share this:The "silent symptom" that no one wants to talk about...I understand completely, deafedteacher! I've got the exact same problem! Why isn't there a "pill" for that? (by the way, I used to be a middle school math teacher - now on "TRS disability" - what a joke!) I'm 52 also...diagnosed 2 years ago. I'm in the CARE-MS study, currently doing Rebif (ugh!) but will get Campath in Dec. Happy Birthday to me!<img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br />Marlene
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marigold314 replied to Jeffrey A Rumbaugh, MD, PhD's response:
I recently had an mri for a dizzy spell. Something came up abnormal. The neurologist ordered 3 more tests before he even saw the mri results. Now that he has seen it he want to order a lumbar puncture to rule out MS. Other than slight, very slight numbness on the left side of my body and no sex drive( I just learned that can go along with MS) I have no symptoms that I know of. I lump most things in with menopause. Are there treatments that benefit a patient with almost no symptoms? Do I need to run out and have this test done now or when symptoms become apparent?
Marigold
Report This| Share this:The "silent symptom" that no one wants to talk about...I recently had an mri for a dizzy spell. Something came up abnormal. The neurologist ordered 3 more tests before he even saw the mri results. Now that he has seen it he want to order a lumbar puncture to rule out MS. Other than slight, very slight numbness on the left side of my body and no sex drive( I just learned that can go along with MS) I have no symptoms that I know of. I lump most things in with menopause. Are there treatments that benefit a patient with almost no symptoms? Do I need to run out and have this test done now or when symptoms become apparent?<br />Marigold
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justducky65 replied to marigold314's response:
Hi I woke up one day with numbness on my left side & when it stayed for 3 weeks I ended up getting xray to rule out bad disc then that didnt show anything so I got an MRI & that showed a lesion at brain stem. I still have numbness & bad fatigue & I did do the lumbar puncture & mine showed the o-bands. my evoked potentials was negative or OK though. but with several of the other test they declared I had CIS ( clinical isolated syndrome) and went ahead and started on Betaseron. 2 1/2 years now & now other big exacerbations. My first episode lasted about 11 weeks. after that I was left with some permanent numbness & tingles ( esp if I get overheated which happens very easily ) Lots of people get LP but they come up negative but they still get a DX. I wonder if since I was in an exacerbation maybe my O-Bands were more prominent but who knows.... I am not a doc or nurse . Best wishes.
Debi
Report This| Share this:The "silent symptom" that no one wants to talk about...Hi I woke up one day with numbness on my left side &amp; when it stayed for 3 weeks I ended up getting xray to rule out bad disc then that didnt show anything so I got an MRI &amp; that showed a lesion at brain stem. I still have numbness &amp; bad fatigue &amp; I did do the lumbar puncture &amp; mine showed the o-bands. my evoked potentials was negative or OK though. but with several of the other test they declared I had CIS ( clinical isolated syndrome) and went ahead and started on Betaseron. 2 1/2 years now &amp; now other big exacerbations. My first episode lasted about 11 weeks. after that I was left with some permanent numbness &amp; tingles ( esp if I get overheated which happens very easily ) Lots of people get LP but they come up negative but they still get a DX. I wonder if since I was in an exacerbation maybe my O-Bands were more prominent but who knows.... I am not a doc or nurse . Best wishes. <br />Debi
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marigold314 replied to justducky65's response:
justducky, Thanks for your reply. I am so new to all this that I didn't understand some of the terms you used. What are o-bands. What exactly happens in your exacerbations? WHat is DX? I have only just started reading since the neurologist just gave me the first information yesterday. How are you doing? Are you living normally with some extra inconvenience or is it more serious?
Thanks,
Marigold
Report This| Share this:The "silent symptom" that no one wants to talk about...justducky, Thanks for your reply. I am so new to all this that I didn't understand some of the terms you used. What are o-bands. What exactly happens in your exacerbations? WHat is DX? I have only just started reading since the neurologist just gave me the first information yesterday. How are you doing? Are you living normally with some extra inconvenience or is it more serious? <br />Thanks,<br />Marigold
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swampster1952 replied to marigold314's response:
Hello Marigold,

DX means diagnosis and o-bands are oligoclonal banding found in spinal fluid. When the doc does a spinal tap, they are drawing fluid from you spine to look for signs of infection. O-bands (proteins I think?) can tell them that something is going on with your immune system, but it can't tell them if the problem is MS or not.

You can probably tell that I am not Debbie (Just ducky). But back to the original thread of this discussion... do you still enjoy having sex, or has the sexual side of your personality just kind of dried up and blown away?

Dave
Report This| Share this:The "silent symptom" that no one wants to talk about...Hello Marigold,<br /><br />DX means diagnosis and o-bands are oligoclonal banding found in spinal fluid. When the doc does a spinal tap, they are drawing fluid from you spine to look for signs of infection. O-bands (proteins I think?) can tell them that something is going on with your immune system, but it can't tell them if the problem is MS or not.<br /><br />You can probably tell that I am not Debbie (Just ducky). But back to the original thread of this discussion... do you still enjoy having sex, or has the sexual side of your personality just kind of dried up and blown away?<br /><br />Dave
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AMLYGE responded:
Pam I understand... I'm 28 and not even the slightest bit interested most of the time...

I really drives my nuts because I am in a very long term relationship (8yrs) and sometimes I wonder why he's still around... I feel like I have to drag myself along the whole process sometimes... and it has NOTHING to do with him

very aggravating! I have to try to figure out ways to make it special and then eventually it's ok...
Report This| Share this:The "silent symptom" that no one wants to talk about...Pam I understand... I'm 28 and not even the slightest bit interested most of the time... <br /><br />I really drives my nuts because I am in a very long term relationship (8yrs) and sometimes I wonder why he's still around... I feel like I have to drag myself along the whole process sometimes... and it has NOTHING to do with him <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"><br /><br />very aggravating! I have to try to figure out ways to make it special and then eventually it's ok...
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Always14989 responded:
I wonder if anyone else experiences this:

I have a wonderful hubby that takes care of me and is very understanding but...

I find that my energy level is so low that if I do THAT, I don't have the stamina to do all the other things slated for that day!

And also:

Hubby's and my Circadian Rhythms are way off. He is "energetic" in the evening while I am Al(ways) running on "fumes" by 5 or 6 PM.

Throw a teenager and a college student in there, and we don't get much time alone. He keeps reminding me that The Drs. (on tv) keep saying he needs "more" to keep his heart in good shape. (cardio workout,you know)

Sigh! I don't have an answer back for that one. Haha!

Ah well...

Smiling and Shrugging,

Al(ways tired!)
Report This| Share this:The "silent symptom" that no one wants to talk about...I wonder if anyone else experiences this:<br /><br />I have a wonderful hubby that takes care of me and is very understanding but...<br /><br />I find that my energy level is so low that if I do THAT, I don't have the stamina to do all the other things slated for that day! <br /><br />And also:<br /><br />Hubby's and my Circadian Rhythms are way off. He is "energetic" in the evening while I am Al(ways) running on "fumes" by 5 or 6 PM. <br /><br />Throw a teenager and a college student in there, and we don't get much time alone. He keeps reminding me that The Drs. (on tv) keep saying he needs "more" to keep his heart in good shape. (cardio workout,you know)<br /><br />Sigh! I don't have an answer back for that one. Haha!<br /><br />Ah well...<br /><br />Smiling and Shrugging,<br /><br />Al(ways tired!)
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vkwilcox responded:
Hi Pam,
it is nice to know that I am not alone either, I love my husband very much, but I have no interest in sex either, My husband gets upset he saays that he understands but I still bad, I dont like to have sex because I am so dry, so it hurts, we have tried everything, but I am in so much pain,also in my back from the ms, i know how u feel, keep in touch
Vonda
Report This| Share this:The "silent symptom" that no one wants to talk about...Hi Pam,<br />it is nice to know that I am not alone either, I love my husband very much, but I have no interest in sex either, My husband gets upset he saays that he understands but I still bad, I dont like to have sex because I am so dry, so it hurts, we have tried everything, but I am in so much pain,also in my back from the ms, i know how u feel, keep in touch<br />Vonda
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