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I’m just holding my breath…

Posted Aug 24 2008 10:52pm
…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!
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