Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Sunday, January 8, 2012

Nothing Is Too Small to Talk About

Sometimes I get a weird MS thing where just as I’m falling asleep I “hear” a loud noise that wakes me. I’ve spoken to other people with MS who have the same thing happen, so it’s not an odd thing that’s exclusively me.

It started last summer when as I was falling into sleep I heard the loud sound of a cat screeching outside the open window. My eyes shot open and I shook my husband asking if he’d heard it. Of course had he heard it, he’d be awake. It was very loud. But as I sat up in bed the sound from outside was still, not at all like there had been any kind of ruckus from a cat. I even had my husband check on our cats to make sure they were okay. The sound had been that real. Our cats were okay and I heard nothing else from outside. I decided it must have been a very vivid dream, nightmare, and I was actually further asleep than I thought.

A few weeks later the same thing happened, but this time it was the very loud sound of a large car screeching, braking, on what sounded like our street, right in front of our house. This time my husband was still downstairs on his computer and there was no motion like anything that loud had happened that close.

It happened again, sounding like a drop of water amplified through concert speakers. It started happening more frequently, about 2 or 3 times a week! One night just before I started my disease modifying medication, I awoke after hearing a gunshot that seemed like it went off right next to my ear. It was becoming more and more disturbing. I was sure it had something to do with the MS but I wasn’t sure if it was a new symptom or just powerful suggestions my mind was acting out from fear. All the sounds that awakened me were loud and negative and gave me a frightened awakening.

I talked to some other MS patients in a discussion group I take part in. Roughly half have experienced the same thing. It was actually a comfort to all of us to know we weren’t alone!

Discussion and communication is so important in every aspect of our lives including and perhaps especially concerning MS. There is no such thing as “a little thing” or something not important enough to tell your doctor. If you are the only patient your neurologist has who is experiencing something, tell them anyway. If they speak with a colleague who mentions that 3 patients have mentioned a symptom and it’s the same one, well, now that’s 4, you’re not alone. Maybe that one “little thing” is a small piece that completes a section of a researcher’s puzzle. Doctors and Researchers need to know what's going on with us to do their work effectively. They don't have that information if we don't tell them! Maybe what seems like nothing is the key to something huge.Don’t take the chance of not mentioning it to your doctor!

I’ll be going back in to see my neurologist next month and I’m going to mention the "dream noises” then. By the way, since starting my disease modifying drugs, the dream noises still happen, but much less frequently and they are slightly quieter, happy, noises. Makes me think it might be a little bit me and a little bit symptom since I’m not alone. It’s certainly worth talking about.

Have you or someone you know with MS experienced "dream noises?" Share your story and be sure to tell your doctor!

1 comment:

BethAnn said...


I have had the same thing happen to me. I hear 'music'. It is the strangest thing. The house will be totally quiet, and it is when I am sleeping and I will hear 'music'. I asked my husband if he heard it, and he said you are not alone. Beth Ann