Chat transcripts

Moderator:

Welcome, everyone, and thank you once again for joining us tonight. Tonight’s chat will be a moderated question and answer session. You may send your questions now and at any time throughout the chat tonight. Your question will appear to the audience when our guest responds to it.

Dr Foley:

Your neurologist, urologist, or internist is the place to start. It is difficult to discuss, but we did a study w/ neurologists who said that althougth they were uncomfortable at times w/ the topic, they would either try to help or refer their pts. to someone who could

Moderator:

Welcome, everyone, and thank you once again for joining us tonight. Tonight’s chat will be a moderated question and answer session. You may send your questions now and at any time throughout the chat tonight. Your question will appear to the audience when our guest responds to it.

Our guest this evening is Frederick W. Foley, PhD. Dr. Foley is Associate Professor of Psychology, Albert Einstein College of Medicine and Director of Neuropsychology & Psychosocial Research, Bernard Gimbel Multiple Sclerosis Center, Holy Name Hospital. He is also the author of the MSF publication Intimacy and Sexuality with Multiple Sclerosis. We are very honored to have him here tonight. Welcome, Dr. Foley!

Dan Question:

Is it inevitable that MS will affect me sexually? What are the statistics because - so far, so good.

Dr Foley:
Answer:

It is not inevitable, although the majority of men do report sexual changes w/ MS. The good news is that most of these changes are very treatable. The hardest part of this process for most is getting information and taking the chance to begin talking w/ their health care team, or organizations that can provide you with appropriate referrals

Dr Foley:

Thank you for the introduction, sorry I got ahead of you!!!

Moderator:

Not a problem - everyone's anxious to hear from you!

Moderator:

Everyone, as I send questions to Dr. Foley, it will take a moment or two for him to answer. The down time is a great time for you to get your questions in. We have a large audience tonight - let's hear what's on your minds!

DocDH Question:

Effects of MS tend to come and go, but impotency seems to hang around without "time off". Is there a reason for that?

Dr Foley:

Answer: Erectile dysfunction can be caused by many different aspects of MS. Lesions in the spinal cord that regulate sensation in the genitals, erectile response, or ejaculation....emotional responses to managing life w/ MS, clinical depression, or "performance anxiety" Finding the solution requires talking w/ your partner and a professional who can help you sort these issues out and come up w/ a plan

Dan Question:

If I have erectile dysfunction, does that mean I will always have it or can that symptom remit like other symptoms do?

Dr Foley: Answer:

The symptom can remit like others, but if you have it for more than a few months, it would be worth your while to visit your neurologist or urologist (or someone you are referred to) to get treatment. Many guys I know take medicines to help w/ erections once in a while, and do not require them at other times

Moderator:

Remember, you may send your questions now and at any time throughout the chat tonight.

Hagrid Question:

I'm newly diagnosed and newly married. I'm worried about starting medications - do they affect your sex drive?

Dr Foley: Answer:

It is very important to take one of the disease modifying medicines. None of them affect sex drive or performance directly, although if you have flu like side effects from interferon meds you may not feel very sexy that evening. Very few men w/ MS have experienced this to be a significant problem

DocDH Question:

After discussing the e/d with my neurologist, I was given a perscription for Viagra. I don't think that is a "cure" but is merely treating the symptom. Is there treatment that will actually make the condition better, or must we settle for treatment of the symptiom?

Dr Foley: Answer:

If the ed is caused by ms directly, there is no cure, but the PDE- 5 nhibitors, or other medicines and/or procedures, treat the symptom

Moderator:

Thanks for all the great questions you're sending, folks. Keep 'em coming - there's plenty of time left.

Dan Question:

Is my neurologist the appropriate person to discuss sexual issues with? How do I break the ice? We don't exactly have a great report.

Dr Foley: Answer:

Developing a crooked penis has not been associated w/ oral medicines for ed, that I know of. It is sometimes associated with meds that are injected into the penis for ed, as it is a result of the buildup of scar tissue from the injections. but even with the penile injectables it is relatively uncommon if they are used as prescribed

Moderator:

It seems like the wrong question came across with that answer. The question was whether medicines for ED can cause a crooked penis.

Dan Question:

can the disease-modifying drug delay onset of sexual problems?

Dr Foley: Answer:

Disease modifying drugs have been shown to delay progression in gait, and slow lesion formation in the brain. It is likely they slow the development of all symptoms, but this has not been well documented.

Moderator:

While Dr. Foley prepares his next answer, let me remind you that there are still several upcoming events for National MS Education and Awareness Month. Next Wednesday there will be a teleconference dealing with cognitive symptoms, and on the 29th a special teleconference for caregivers. For more information, call MSF toll-free at 888-673-6287.

DocDH Question:

What type of procedures are available as an alternative to medicines?

Dr Foley: Answer:

There are other alternatives to oral or injectable meds. There are vacuum pumps that provide an erection. Following its use, you slide a band off the pump onto the base of the penis to hold the blood in, allowing you to maintain an erection. There are also surgical alternatives, such as penile implants Penile implants can now be done w/ microsurgery, so they have fewer complications and better satisfaction.

Moderator:

There are still many of you who've joined us tonight that we haven't heard from - don't be shy! Send your questions now or at any time throughout the conference this evening.

Dan Question:

If a person uses a drug for ED will they become dependent on it and unable to perform sexually without it??

Dan Question:

If a person uses a drug for ED will they become dependent on it and unable to perform sexually without it??

Hagrid Question:

If someone does develop sexual symptoms, how treatable is that?

Dr Foley: Answer:

Over 90% of sexual problems caused by MS are very treatable. The most important thing to remember in finding solutions is communication, communication, communication.....w/ your health care team and your partners....approach it as a challenge or journey together....it will help take the pressure off you.

Moderator:

Thanks for your patience in between questions everyone! Feel free to keep those questions coming.

Moderator:

This comment just came through to me that I wanted to share with all of you:

tom:

I just came across this site from another disabled group I am sci and just lost a very lovely girlfriend to MS keep up your good work with this terrible disease I know this might not be the right forum fo this but best of luck to all My love enjoyed her sexuallity and we felt close to the end

Moderator:

Thanks, Tom!

alex Question:

i'm secondary progressive; i've had ms for over 25 years. i've been on 20mg/day of prozac for at least 15 years. although i still think about sex, doing something about it is another thing - asfar as an erection is concerned; any suggestions?

Dr Foley: Answer:

Prozac and similar SSRI meds can cause erectile dysfunction...but a severe clinical depression is much worse than ed.......speak w/ who prescribes the prozac about antidepressant meds that impact ed less often...or you may want to try oral or injectable ed meds. depression can also cause ed, so if your depression is not well take care of by prozac, talk w/ your doc about that!

Moderator:

We've had a few people just join us: Welcome! Tonights chat will be a moderated question and answer session. You may send your questions now and at any time throughout the chat tonight. Your question will appear to the audience when our guest responds to it.

DocDH Question:

Is there an amount of viagra, etc that becomes a health risk, if taken too often during a week? How many times a week is it safe to take such medicine?

Dr Foley: Answer:

This is a question to talk w/ your doc about. The recommended frequency depends on your overall health and other meds that you may be taking. in our experience in the ms clinic, there is a wide range of how often men take viagra....if you want to have sex more often than 3 times a week, taking some of the longer acting ed oral meds (like cialis or levitra) might allow you to lower the frequency of taking it.....

Moderator:

For those just joining us, let me point out that you can read the transcript of the chat so far by clicking the quill and ink button on the top right hand corner of your screen. But don't hesitate to send your questions now.

regnignam Question:

has any one particular ed drug been found to be preferred over or superior to the others?

Dr Foley: Answer:

The only oral ed drug done in men w/ MS that has completed clinical trials has been viagra. but the mechanism of the others is basically the same, and your doc can prescribe any of them for use in ms. none of the ed drugs have been found to be prefered to date.

Dan Question:

is there an antidepressant that might help increase or improve sexual performance?

Dr Foley: Answer:

there is one antidepressant...welbutrin...which does not interfere w/ sexuality (as many others clearly do), and may slightly help sexual performance. however, other medical conditions or a history of seizures may make your doc hesitate before prescribing it, since it can induce seizures in people with a history of them.

abner Question:

I can get an erection but Ive lost sensation in my penis a lot. can anything be done for that?

Dr Foley: Answer:

There is no medicine that improves numbness or loss of sensation. There are meds that can dampen down uncomfortable sensations (eg burning, tingling, or painful sensations). for partial numbness, sometimes greater stimulation w/ a vibrator can help w/ the sensation loss.

Moderator:

We've got about fifteen minutes left, folks - there is still time to get your questions in now.

DocDH Question:

Fatigue is a common problem with MS. Does sexual activity increase fatigue and thus impact other activities?

Dr Foley: Answer:

MS related fatigue can impair sex drive or performance (if you are exhausted you may not desire sex or it may seem like too much work). fatigue is very common, so many guys i know have switched to having sex in the morning, rather than at night (when fatigue is worse usually). There are also meds for fatigue that are commonly used in MS, which may help.

noname Question:

What is the likelihood of Avonex causing lost of sensation AND seizures?

Dr Foley: Answer:

This is a good question for your neurologist. I am not aware that Avonex (or any of the disease modifying drugs used in MS) causes either of these symptoms.

Moderator:

Thanks for your patience in between questions, folks. Let me take a moment to let you know that after tonight's chat, a transcript will be available by email.

regnignam Question:

can you comment as to the effects of tysabri upon sex drive/performance?

Dr Foley: Answer:

there is no data on tysabri influencing sex drive or performance. in ms clinical trials of drugs that modify the disease, the measures that are mostly focused on are progression of overall neurological disability and MRI changes.

alex Question:

one of the meds i was prescribed for fatigue was prozac, even though anti-depression is it's main function. could this have been wrong as i don't think i was "depressed"?

Dr Foley: Answer:

prozac is one of the stimulating SSRI meds, so it sometimes helps to lift fatigue. but it can cause ed. there are other meds for fatigue that impact ed less. talk w/ your doc about this.

Moderator:

We're getting close on time. Last call for questions, folks, and we'll see if we can get through them all. We just want to make sure everyone had a chance!

DocDH Question:

Earlier you suggested that emotional responses may impact sex drive or performance. Are there any ways to lessen the impact of emotional responses?

Dr Foley: Answer:

emotional responses can be dealt w/ effectively w/ individual or couples counseling. we published a study a few years ago that demonstrated counseling that targets communication and good symptomatic management improved emotional communication, problem solving in couples, and sexual satisfaction. not everyone needs counseling....many can learn to communicate more openly and acquire educational materials about ed or sexual problems in ms and improve by talking w/ docs and their partners. Some emotional responses, like severe depression, need professional treatment.

Moderator:

While Dr. Foley prepares his next answer, let me remind you again that there are still several upcoming events for National MS Education and Awareness Month. Next Wednesday there will be a teleconference dealing with cognitive symptoms, and on the 29th a special teleconference for caregivers. For more information, call MSF toll-free at 888-673-6287.

Dan Question:

can you tell us about any good books, websites, resources, where we can get more information like this?

Dr Foley: Answer:

yes. the MS Foundation, the National MS Society, the United Spinal Association, the Paralyzed Veterans of America, and the Sexuality Information and Education Councel of the United States (SIECUS) all have information, booklets, articles, or educational resources relating to sexuality and disability.

Moderator:

Well, everyone, we've reached the end of our time this evening. Thank you so much for joining us, and a heartfelt thank you to Dr. Foley for volunteering his time and knowledge for us tonight. I will now open the floor for comments and discussion for the next twenty minutes.

Moderator:

Thanks, Dr. Foley and good night!

Dr Foley:

Your welcome. It was an honor to be here with you all!!!