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  • Men Only - E.d. & Ms (must Be 18+)

    After exhausting all searches I came to the realization that a very common problem many of us guys experience to varying degrees hadn't been discussed. And I have a vested interest as I suffered with it for 2 years before having the courage to discuss it with my doctor. All men with MS know of what I speak and, yes, it sounds like the TV adds airing so frequently at any time of day during any type of broadcast. Paraphrasing the subject, it is our ability to either get hard or to maintain being hard... pervasive and openly discussed for all men, but men with MS, unknown to me, were targets. I experienced my sporadic attacks and dodged this bullet. Then, focused on arresting an attack with Solumedrol IV for 5 days as usual, I was fine again. Except this time sure,
    I had no problem getting hard, but I couldn't keep it up. I dismissed it thinking that's odd, I must be tired. The next day, with that thought in mind, I tried it solo. Yes guys, you know because we all do it, a typical J.O. Easy, right? Not this time.

    I said to myself, no, this can't be, I'm too young. I'll just relax, take my time, and J.O. perfectly. Two hours later and not feeling it like I should have, I finally shot, but, was it great? Far from it. Did I enjoy it? No way. Was I worried? You bet.

    MS wasn't enough to deal with. Now I couldn't stay hard enough to get off. And what did I do? Nothing. For two years I ignorantly "suffered in silence" as my doctor phrased it.

    I consider myself an intelligent guy and although I have no misconception of thinking of myself as a Superman, there's not much that I fear and I'm in no way the timid type. Quite the opposite, very vocal. But when it came to being vocal about not being able to stay hard to another man, in this case my doctor, it took me two years. And the emotional weight that staying silent created felt so much longer than two years.

    Today, I'm fine again. Even better than fine. And it was so easily rectified. I didn't even have to complete my sentence to my doctor and he had his prescription pad in hand writing me two prescriptions. One for Viagra. And another for Cialis telling me to try each of them to find out which worked better for me.

    I posted this for two reasons. The first is that perhaps it might help any men out there who are in the same situation I was and that perhaps it will facilitate a nudge or more towards a simple remedy so easily achieved. And if no guys out there are also suffering in silence then at least the subject is out there ready for a newcomer and certainly out there for comment.

    The second reason is that there's the sub-topic of Viagra and Cialis. There are different strengths, frequencies, dosage regimens, cost and insurance considerations. I'll elaborate about what I've learned in the short time frame I've been using both of the above, not at the same time, and the several topics related to both. Besides, there are plenty of ActiveMSer men out there who are very knowledgeable on one or both. And knowledge and experiences about either drug benefits all.
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    YES, but did not reply/contribute.
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    YES, but it didn't apply to me.
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    Never saw/read the post as it was 'buried'/out of sequence.
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  • #2
    Thanks for the post, MB. Good to know I'm not alone in that department, and I'm sure other guys with MS feel the same way. The blue diamond pill has helped me substantially....
    Dave Bexfield
    ActiveMSers

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    • #3
      And to reiterate, guys you are NOT alone, even though it can feel that way. There are workarounds for many situations in this department. Not interested? Sorry, you need to man up in any way you can if you have a partner....
      Dave Bexfield
      ActiveMSers

      Comment


      • #4
        options

        I started dealing with this problem before I knew that I had MS. Above all else, this and gait problems were the most irritating problems that I had. I have been dealing with this particular problem regularly since 2010, but on and off for a few more years before it became "normal".

        I too was able to get it up initially, but keeping it up was quite the ordeal. I have used Cialis 5mg, 20mg, and Viagra 100mg. Early on, the 20mg Cialis gave excellent results - but in time I found that I needed to take the 5mg every day to be able to maintain it long enough. Eventually that wasn't enough as well, and I then went to 5mg daily plus 20mg 1-2 hours prior to relations. Cost began to be an issue, and my neuro wrote me a prescription for sildenafil 20mg x 5 tablets - this was the same drug as Viagra, but it was available as a generic and used for PAH instead of ED. This too worked for a while. I eventually ended up going to a 20mg Cialis the night before, again in the morning, and again at night - plus 40-60 mg of Viagra. Again, this worked for a while... plus it made me flush pretty bad along with a constant beating in my ears when I would lie down at night.

        I've tried the pumps an constriction rings, and they sort of work, but she says that my business end feels "cold" and un-natural. Finishing the job was fairly difficult too, and you definitely aren't going to achieve a pregnancy with this method.

        I started with the Muse alprostadil urethral suppository system. The 500mg strength didn't do anything. We went to the 1000mg strength, which sort-of worked (not really). If I preloaded with about 40mg of Cialis in the morning, I could do the Muse that night and have a decent enough erection to get the job done - but then I would be sore for a few hours afterwards.

        I saw my urologist for my 6-month appointment last fall and brought all this up with him and inquired about the injectable treatments. He wanted to try a compounded medication called "trimix", which consisted of alprostadil, papaverine, and phentolamine...

        I now feel like a teenager again! I started at .4 mL in the doctor's office, but it wasn't good enough for action. Two mornings later (when the doctor's office was open), I tried .6 mL. Definitely ready for action - maybe too much so! After two hours of maintaining things in a "ready for action" state, I called my urologist and reported to his office. At the three hour mark, it did start to go down, but it was still quite usable. We watched for another 30 minutes, and while it probably would have been okay, but I wanted to have piece of mind. We did a phenylephrine injection at that point and everything got the memo in short order.

        A few nights later, I used 0.5 mL and had a *good* time. I took some oral phenylephrine (Sudafed PE) 60mg just to be on the safe side. I still was ready to go at the 2 hour mark, but not at the three. I have titrated down to 0.3 mL now.

        The injections do not hurt at all. Don't be afraid of the needles. You can pretty much have things ready on-demand within about 2-5 minutes max.

        I get the medication from a compounding pharmacy along with insulin syringes with a subcutaneous needle. The medication comes premixed in a 5mL vial. If you keep it in the freezer, it should last about 6 months - defrost prior to use! I have found that warming the vial by holding it in my hand for a few minutes prior to injection seems to help things work with a lower dosage.

        Each 5mL vial costs me $100 without any insurance factored in. Cialis and Viagra are about $20-$25 per pill...

        Do not be afraid of the needle! My only regret is that it took me 6 years to figure this out!

        Comment


        • #5
          Thanks for the post, msrunnersc. And great advice: don't fear the needle. That's probably a pretty big mental hurdle more so than physical.
          Dave Bexfield
          ActiveMSers

          Comment


          • #6
            Speaking of not fearing the needle, and excuse my ignorance on the topic, but where do you do the injection? I am guessing it is at the base of the penis???

            Difficult to get over the needle for sure . I had a tough enough time getting used to Avonex injections year ago - and that was in my leg! (I am on Tecidera now)

            BTW, I take Levitra - 20 mg and am continuing to have difficulty staying hard. Thinking about trying something else - either another med or ???

            Comment


            • #7
              PF, have you tried Viagra? It might have more oomph than a pill taken daily, although that means advance rendezvous planning, a minor hassle.
              Dave Bexfield
              ActiveMSers

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