Thanks, AAN!

The American Academy of Neurology recently published guidelines for addressing psychiatric disorders in people with multiple sclerosis. That is an important, and most welcome, step.

As the AAN’s paper points out, people with MS are at increased risk of a number of psychiatric illnesses, particularly depression and a disorder called pseudobulbar affect, a phenomenon in which people laugh or cry at inappropriate times without feeling particularly happy or sad. 

Despite the potentially debilitating effects of psychiatric illness, these disorders tend to get lost in the shuffle for many people, not just those with MS. So it’s good to see one of the nation’s leading health agencies addressing the matter. The report evaluates the extent to which psychiatric disorders affect people with MS and examines various therapies in terms of their likely utility in helping those people. This should all add up to enormous benefit to people with MS who do suffer from these disorders – and for their loved ones, too.

One of the many perplexing aspects of MS is that none of us who have been diagnosed can know exactly when we actually began to have MS. Symptoms can appear and disappear without particular notice for months and years before a diagnosis is made, and often those symptoms never end up being recognized as having been related to MS. For my part, I suffered a terrible bout of obsessive-compulsive disorder, which manifested itself in the form of obsessive worry and attendant behaviors, a few years before I was diagnosed. I was lucky that my doctors figured out pretty quickly that I had OCD, and a wonderful therapist guided me through cognitive-behavioral therapy that allowed (and continues to allow) me to manage my condition.

Whether my OCD is somehow related to my MS will probably never be known, and perhaps it doesn’t really matter. But the AAN’s report, recognizing and reminding mental-health professionals to be on extra lookout for psychiatric illness among patients with MS (given their elevated risk), should pave the way for life-changing help for many people.

So, thank you, AAN.

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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    3 Comments

  • Tom B.   Mar 13, 2014 1:29 PM
    I'm snowed in today so I couldn't go to work and I had time to read your blog and comment. MS is an oddball disease with a seemingly endless number of symptoms. I don't have time to worry about all of them. I adjust as well as possible and try to keep moving.
    Thank you for the blog.
    Tom
  • Anybeth   Mar 13, 2014 5:13 PM
    Please forgive my "book" ;-)

    It's good they're looking, but this sentence concerns me:
    "Clinically, false-positive results are not a major concern because individuals with the conditions typically identified (e.g., adjustment and subthreshold depressive disorders) can benefit from further assessment."

    As far as I can tell, the author is saying that people who test positive for depression but aren't depressed have some other condition that merits psychological attention. It denies the possibility that the tests could have false positives who don't qualify for any diagnosis. That kind of presumption is a bad place to start.

    I always wonder how many of the questions on various psych tests (and diagnostic criteria, for that matter) simply shouldn't apply to people with MS. I mean, "Are you usually tired?" "Do you find yourself unable to do the things you used to do?" Um, isn't that the vast majority of us?

    I do accept a psych diagnosis I got years ago: PTSD. I think it encompasses the symptoms so much better than any other diagnosis I had before, that this is the only one I say now. It has nothing to do with my MS and it's been of minimal trouble the past couple years.

    But I've taken a couple of neuropsych exams. Among other things, they're always concerned about my anxiety level. I have some sensory processing disorder. You put me in an unfamiliar room with an unfamiliar person, bright lights, and general office noise. Then you give me a parade of tasks that are difficult for me to do. I get flustered because I'm overwhelmed. If it gets worse, sensory overload gets me very agitated: I just can't stay still. In such times, I'm not worried about anything, there's just too much for me. The moment the stimuli lessen, I calm very quickly, as one who's had a great burden lifted from them. But all these things the neuropsychs read as anxiety. One group insisted I had GAD, despite never directly checking me against the criteria. (I'm not much of a worrier.) They have hammers, so every problem is a nail. I didn't follow their recommendation -- my neuro actually scoffed at it! I "treated" the problem by wearing hats and sometimes sunglasses (block light), occassionally earplugs (block sound), avoidance of some places (like rowdy restaurants), and, rarely, a short-acting sedative (like before an MRI). And I can do forms better when I cover most of it as a way to break the chore into small parts.

    I really hope someone is studying this. There are MS symptoms which can, in some instances, look like a psychological issue. I wish there were some guidelines regarding considering that maybe, just maybe not every problem is a nail in need of a hammer. To treat my "anxiety" by psychological or psychiatric means would be treating a tertiary effect -- a possible outcome of a neurological symptom. Much better to treat the secondary effect and learn how to never get near a meltdown.

    I have lots of weird MS symptoms rare enough they probably won't get studied. I have acquired alexithymia and sometimes aboulia. I had to re-learn emotions from practically nothing. I can be caring and empathetic -- it's just awkward for me, like a foreigner not yet proficient in the area's language. And then there are the times I can't decide anything. (Already wrote how I help for that.) And the scary times that I can't move without some impetus outside my mind. If there's nothing and no one to prompt me, it doesn't usuall last long, anyway. These don't get much study, certainly not intermittant presentations. If I did have interaction with a mental health clinician, I hope I wouldn't be labeled a[n intentionally] difficult patient, what with having a great deal of trouble labelling feelings and only sometimes being able to choose. And that, when I say I don't understand, I really, really don't understand. Thinking about it isn't going to help me read Cryllic nor help me understand what you said.

    Do clinicians get ANY training on counseling patients with significant cognitive problems? Even if not, if therapy isn't going well with a mentally impaired client, I would hope it might occur to the practitioner that they need to focus on the client's needs, that not everything needs to be by the book -- anyhow this person isn't IN the book.

    I'm sorry. I really am glad we're getting some studies. Unfortunately, I still see lots of problems.
  • marsha   Mar 13, 2014 7:00 PM
    Diagnosed at 40 after 20 years of being in a benign stage. At 50, I was again filled with anxiety and was afraid to walk. My neurologist suggested Zoloft. At first I said NO. The anxiety got so bad, every time I had to stand waiting, I would have to pee. At last I decided to try it. Within a week, I walked around the block, climbed my front steps and never got anxious waiting again. It also shifts nerve pain to an acceptable level. Now at 67, walking is a struggle but i use a scooter and don't worry about what I cannot control.