Are You Ready for Bed at Noon?

(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

I thought that I’d finish writing this last night, but I was too tired.

Same thing the night before…and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates that about 80 percent of the people who have MS have fatigue as one of their symptoms. (Only 80 percent?  The other 20 percent must be faking alertness).

I use the drug Provigil (Modafinil) to improve my alertness. I like to swim in the summer and do some strength exercises in the winter.  And that helps. But is there something we’re overlooking?  Something like another illness on top of our MS.

Is it a Sleep Disorder?

A 2014 study in the Journal of Clinical Sleep Medicine indicates we may be closing our eyes (sorry, I couldn’t resist that) to the fact that actual sleep disorders, such as narcolepsy or sleep apnia, are disrupting our sleep and causing some, or most, of the fatigue that we attribute to MS.

Researchers at the University of California, Davis and Boston University studied a group of MS patients who said they had excessive daytime sleepiness (based on the Epworth Sleepiness Scale) or an abnormal level of fatigue (based on the Fatigue Severity Scale).  Of that group, 38 percent screened positive for obstructive sleep apnea, 32 percent for moderate to severe insomnia and 37 for restless legs syndrome. Yet, only between 4 and 12 percent of that group reported that they had been diagnosed for those illnesses.

This seems to be more evidence that something known as “diagnostic neglect,” which I wrote about several weeks ago, is going on.  Many of our doctors seem to have tunnel-vision when it comes to the possibility that a problem other than MS may be causing one of our MS symptoms.  Even my neurologist, who I love, has never suggested that I be tested for an illness such as sleep apnea.  I’m up twice, sometimes three times, a night and we’ve always attributed that to bladder problems.  Maybe it’s something else.  I plan on asking her about this on my next visit.  If you’re tired much of the time, maybe you should have the same conversation with your doc.

Before You See the Doc…

Before you have that chat, there’s a good overview about MS and sleep problems on the web site of the National Multiple Sclerosis Society.  Taking the time to give it a read will give you a good foundation for that talk.





7 thoughts on “Are You Ready for Bed at Noon?

  1. imog

    I had memory problems and was diagnosed with mild cognitive impairment due to my MS. Not so severe as I passed the CNRN exam. I also developed speech problems and was found to have weakness in my tongue. I underwent therapy for both. I got worse. Eventually I was put on Provigil for my cognitive impairment with improvement in my testing. I still had problems falling asleep during the day. It was a sharp PA that asked if I was ever tested for sleep apnea. I hadn’t so she had me tested. I was found to have moderate sleep apnea and put on CPAP. My symptoms improved vastly with great improvement in memory. Last year I developed more problems, passing out, waking gasping for air with rapid heart rate. After more testing for my heart, I asked if my sleep apnea was worse. Eventually, after many problems with referrals to doctors not covered, I got one approved, was tested. My sleep apnea was worse, bordering on severe. The doctor upped my pressure with some improvement but still had daytime sleepiness. Finally got approval for Nuvigil which is helping. It pays to be vigilant and persistent to get property tested and diagnosed.


  2. terese0194

    Hello, This is my first time on your site. I was mesmerized by all of the information you have and wrote about here on your site. It’s wonderful. I’ve been trying for years to find someone who would acknowledge the tight band that I feel around my head. When I read about “the MS hug” I nearly jumped out of my chair. It was the first time that anyone even remotely acknowledged that it does exists. It’s been driving me crazy thinking that it must be a phantom thing. It feels tight sometimes and like a World War II helmet sitting on my head that I can’t take off. I know I can feel it. My husband sees me trying to remove it. I’m in my mid 60’s and was diagnosed with Tic-Deloureux (by two different neurologists in two different states) when I was 15 yrs old. I was always a sickly kid and teen, falling all the time, coming down with everything that passed our house. It’s been a long trek. I’ve had so many of the symptoms everyone has, fatigue is the worst. My hands jerk now, and the MS hug is quite the bother. I’ve walked with a cane for years and was in a wheel chair for a number of years also. Recently they found a small tumor inside my spinal cord, but it could be lesions. I have a pacemaker so I can’t have an MRI. Thank you for posting about “the MS hug”, I’m so grateful to you. I’ve looked at other MS sites and no one ever mentioned “the HUG”. And when I’ve asked, they just say they never heard of it either. Even my neurologist says, “I don’t know what that is”. So thanks again. Truly…Thank you!!!


    1. The MS Wire Post author

      Hi Terese, Thanks so much for your comment. I’m pleased that you’ve found my site useful and will join my email list so that you can know, right away, when new material is posted.

      I expect to be adding some improvements and new content over the next few weeks, so stay tuned.

      As for your neurologist not knowing about the MS “hug,” I’d be looking around for a new neurologist, preferably one who specializes in MS. Anyone who’s familiar MS should know about the “hug.”


      Liked by 1 person

      1. Terese

        Thanks Ed,
        I look forward to the emails. I am going to look for a new neurologist. We will be switching out our insurance soon and she’s not in our network. I may have to travel to find one who specializes in MS but I know it will be worth it even for the travel time.


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