Dear 48,
There are so many reasons why sex can be difficult. I'm a woman with MS and had very low libido for years before I met my husband. Sex wasn't a big feature of our relationship, but I made the effort and could enjoy it sporadically.
For a long time, I didn't care whether I ever had sex again. It wasn't until the sixth year of our relationship that I experienced a resurgence in my fantasy life and libido. I don't know why it changed, but I suspect it had to do with some hormonal changes and the fact that my troublesome spasticity and pain were bothering me a lot less. I felt better, and I was delighted to discover that my sensation was still intact.
Although MS can cause nerve damage that affects sensation, I believe that problems with sex and arousal are much more complex. If your boyfriend's MS symptoms seem relatively mild, his reticence might be largely emotional. We take a big hit to our self-esteem, for one. And if we suffer from fatigue, chronic pain and spasticity, those things can be very distracting.
Touching and oral sex are things two people can do when penetration is a problem. Intimacy is important for bonding and for self-esteem. And it takes the pressure off a man to "perform."
It sounds like sex is important to you, so it wouldn't hurt to have a talk with him about your needs. If he cares about you he'll want to find ways to keep you satisfied--and that could in turn make him feel better about himself. It's good of you to be patient and understanding, but this is a relationship like any other and MS patients generally do want to lead as normal a life as possible. In time, you can work this out.
Kim