Sunday, March 2, 2008

I’m just holding my breath…

…which is why you haven't heard from me in a while. Tomorrow (Monday) I have an appointment with a psychiatrist. This is another hoop I have to jump through as part of my multiple sclerosis disability claim process.

I have to confess that I’m very anxious about this impending “interview.” (Is that the theme from “Jaws” playing in the background?) I am concerned about my future resting in the hands of yet another doctor who doesn’t know me, another doctor whose background may or may not be credible. Here is one reason why I’m concerned:

When I recently saw a second neurologist, supposedly an MS specialist, I was surprised that he was not as current on MS news as I am. Specifically, I mentioned that a medication I took in 2002 for fatigue, Provigil (modafinil), made me suicidal. He said that there was obviously some other reason because Provigil does not have that side effect and is well tolerated by multiple sclerosis patients. I wish I had taken a copy of the 24 Oct 2007 letter from Cephalon, the Provigil manufacturer, reporting updated safety information warning that Provigil can cause psychiatric symptoms. According to Cephalon’s web site, “Psychiatric adverse experiences have been reported in patients treated with PROVIGIL. Postmarketing adverse events have included mania, delusions, hallucinations, and suicidal ideation, some resulting in hospitalization. In controlled trials in adults, psychiatric symptoms resulting in treatment discontinuation were anxiety, nervousness, insomnia, confusion, agitation, and depression. Caution should be exercised when PROVIGIL is given to patients with a history of psychosis, depression, or mania. Consider discontinuing PROVIGIL if psychiatric symptoms develop.”

So tomorrow I’m going to a doctor whose job will be to determine if depression is a contributing cause of my fatigue. (Of course MY answer is, “Yes, I’m depressed about being fatigued.”) I’ve spent days pouring over my old diaries to document my history with fatigue as well as depression. I must say that rereading the diaries is depressing in itself – week after week for ten years, the diary entries complain about fatigue. Sometimes the fatigue is paralyzing, and I’m surprised at how I doggedly continued to look for solutions, never suspecting that MS could have been a culprit.

Now I’m hostage to the disability process. I have to tolerate these medical visits and cooperate as much as possible. But can I continue to bite my tongue when a doctor is being a jerk or just plain wrong? He holds my future disability checks in his hand. Do I have to follow his orders, even if it involves more medications that may have horrific side effects (in 2002, no one knew that Provigil caused suicidal thoughts)? If I go armed with piles of research, will he think that I am a hypochondriac? If I take too much data in an attempt to argue my case that multiple sclerosis fatigue is the culprit and not depression, will I appear like some Shakespearean Queesn who doth protest too much? What will I look like if I lose my temper and start to scream and cry?

Depression and fatigue seem to go hand-in-hand, so I will try to stay open to possibilities and new ideas. But it’s hard to keep an open mind when I have ten years of diaries that show that I'm right! Wish me luck!


  1. This must be very scary indeed. I can't imagine (yet) having disability claims determined by doctors I don't already know.

    Two years ago in the spring, I insisted that my cognitive skills were lacking which concerned me greatly. My neuro agreed to have me undergo a shortened neuro-psy exam which was actually pretty hard to undergo at the time. I would do much better now.

    Well, the examiner's report stated that my cognitive skills were fine but that I was depressed. Well, duh, I could have told him that!! I KNEW I was depressed, but I also knew that that was not the reason my brain was so slow and foggy.

    Hopefully, the psychiatrist will be willing to declare that your fatigue is due to MS not simply due to depression. There is a distinct difference as I've experienced both.

    Good luck tomorrow. I wish you well.

  2. Wear oversized boots so your feet won't be so noticeable shaking in them. I'd suggest you play your cards close to your chest...your goal is to convince this A-hole moron who doesn't know you from Adam with an already biased opinion that EVERYTHING is due to depression because of his field. Be pleasant, but somewhat withholding and convince the little bugger that, "Yes, depressive symptoms ARE often hand and hand with MS, but it is your FATIGUE that is have a good life otherwise and are well adjusted, in spite of having DEBILITATING fatigue from your MS and an assortment of other neurological symptoms. You must be your own advocate and speak strongly to the REAL issues...not something this Jack-A is going to try to make up for you.

    That's my two cents worth...for what it's worth. GOOD LUCK...and stick to your guns...

    Linda D. in Seattle

  3. Thanks for the support Lisa, it's nice to know I'm not imagining foolishness!
    And thanks for the perfect spin, Linda! I hadn't thought about it like that - I've had depressive episodes but continued to work 40-45 hours, so it is the fatigue that is disabling me, not the depression. I'm ready to go and will report back later.

  4. the docs should know MS causes fatigue...i am so sorry you have to prove this. i had no idea of this process. is it a good thing for all of us who have MS to keep a written diary for just such purposes?

  5. YES! It is absolutely necessary to keep logs of medical tests (like MRIs), doctor visits, medications, and symptoms. You can even keep copies of your MRIs.
    Years ago I received advice to keep records, and it has come in handy now. I'm glad I've been tracking everything.