Discussions By Condition: I cannot get a diagnosis.

My GP's can't find a diagnosis, please help!?!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • May 4, 2008
  • 02:40 AM


About 3 years ago, I started having tremendous difficulty staying awake in the afternoon. I had a sedentary job at the time (business executive), and would fall asleep in meetings on occasion. I also wasn't very motivated to do much of anything, couldn't concentrate on one task for more than 30 minutes at a time, and started losing weight. This more or less came on quickly, I'd say within the span of a month or two. I went to my general practitioner, and that started a three year long journey of tests and multiple doctors, but with no ultimate diagnosis. Maybe someone on here has an idea, or has experienced a similar problem and can share your diagnosis? I'll provide as exhaustive a background as possible, and thank anyone in advance for any help you can provide. At this point, I'm pretty severely depressed, largely non-functional in any professional/societal context, and just not sure where to turn.


White male (Northern European descent), 38 years old, 5'8" tall, 120# (down from 135# before this started). Had all the normal immunizations as a child, and good access to health care growing up. Childhood diseases I've had: chicken pox, measles. Diagnosed at 12 with scoliosis, which has resulted (according to doctors when I was a teenager) in a slightly indented lower right rib cage. Neither the scoliosis nor the rib cage have caused any obvious problems in my life, other than occasional back pain and a slightly hunched posture. No other medical problems in childhood, other than a compound fracture of my left arm when I was 7. At 25, I was diagnosed with ulcers of the stomach. They weren't the kind that's treated with antibiotics, so I've been on maintenance drugs for those since then. For a number of years, it was cimetidine (400mg/day I think) and a chewable antacid to supplement that almost daily. I switched to Nexium a couple years ago, which is much more effective for me (it's a one a day prescription, but I take one pill every 3-4 days because I don't like using medication, and that's kept me heartburn free). Even on the extremely low dose Nexium, I almost never need a chewable antacid.

I had an incident of kidney stones 4 years ago. They passed without difficulty (well, except for the excruciating pain, of course).

Around the same time, I also had an infection of some sort in one testicle, which caused it to elevate (and double me over with pain). It was treated successfully with antibiotics after an ultrasound to rule out a twist or something else.

I am nearsighted (diagnosed at 6 years old). It's gotten progressively worse over the years, but I still correct to 20/20 with glasses of reasonable thickness or off-the-shelf contact lenses.

Lastly, I have had scaly and itchy skin on my left side torso (only my left side) since my 20's.

No major history of psychological issues. However, I began seeing a psychiatrist about 10 years ago, just to deal with general unhappiness (which seemed abnormal to me since I was happily married and had become very successful in my career). He felt I had some disorder (I can't remember the name) that made it difficult for me to feel success, and accordingly caused me to keep pushing myself for more and more accomplishment to feel happy. He felt this explained both my mood, my unusual professional success, and a bizarre accumulation of college degrees (so far, engineering, law, education, business, and pilot training). I was put on prozac, which had no effect. He switched me to welbutrin, which also had no effect. The cognitive therapy at some point just started feeling redundant and silly. So 9 months into this, I just quit the medications and cognitive therapy. According to tests in my grade school years, I have an unusually high IQ, with high functioning in both lobes and ambidexterity. I honestly don't think this has anything to do with what's going on now. But if I have something rare, I think the diagnostic devil is probably in the details, so there you go.

About a year ago, my current doctor also had me on Lexapro for about 3 months to try to curb depression and some suicidal thoughts (which I honestly believe are results of the duration and consequences of the physical condition, because they're recent). I will say it slightly lifted my mood, at least occasionally. But I stopped taking it after 3 months because it takes an act of congress to get it refilled under my health plan (as in, a new prescription and multi-level approvals every month), and with my current doctor being an hour drive away it's just not easy to keep from running out (which I know is very dangerous).

I have never used drugs (never even marijuana). I occasionally have a glass of wine or beer (maybe once or twice a month with a meal). I'd classify my activity level as consistently "average" throughout my life up until the last three years. Now, of course, it's closer to catatonic. About 5 years ago, for unrelated reasons, I had a comprehensive physical done that showed normal heart rate (resting and active), BP 110/70, 130 cholesterol, normal lung function and normal blood chemistry. Body fat at that time was abnormal for my level of athleticism, at about 7%.

Current medications: Nexium 40mg (1 pill every 3-4 days), Provigil 200mg (1 pill daily in the morning). I've been taking the provigil for about 6 months now. Other than making me stay up all night occasionally (maybe once every 2-3 weeks), there aren't any side effects. Initially (first 3-4 months) it was helpful in giving me more alertness and concentration and minimizing the periods of tiredness. Now it barely helps, although I did forget it on a trip once and didn't take it for two days, resulting in extreme fatigue and nearly constant sleep. So of course now I have to keep taking it even if it is only maintaining me at pre-medication levels of effectiveness.

About 2 years ago, suspecting adult ADHD, one doctor put me on Ritalin (can't recall the dosage). It basically made me insane (paranoid, manic depressive symptoms, spooky bad judgment skills, sleep problems, etc.) We switched to concerta to try to eliminate peaky effects of ritalin delivery, and it helped a little, but still didn't fix the afternoon tiredness. So we stopped all meds except the acid blocker for the ulcers (cimetidine at the time).


Father was epileptic (diagnosed as a child). He died at age 53 (when I was 14) of a cerebral hemorrhage. He was exceptionally tall (6'7" or so) and skinny (maybe 150#). His father and mother both lived to their mid-80's. His siblings are still alive in their mid 80's. His grandparents all lived into their 70's (exceptional for being born in the Civil War era). My father was alcoholic (never abusive in any way, just drank constantly). One of his great grandfathers had disabling rheumatoid arthritis.

My maternal side is less consistent. My mother is 60, but has some diminished lung capacity (probably do to smoking). She has also fought depression her whole life, at one point being hospitalized for a couple of weeks after attempting suicide, along with one of my sisters (who has a variety of psychiatric issues). My grandfather died at 73 from complications related to stomach cancer, emphysema, and a series of heart attacks. My grandmother is alive and vital at 78, with no health problems at all. One aunt has heart issues (at least one heart attack in her 40's) and a weight management problem (everyone else in the family is height/weight proportional or skinny).


I haven't been exposed to anything toxic that I'm aware of. I do, however, work a lot on very old houses. But that's not new, I've been doing that since my early 20's. About a year ago, I did come across a major mold infestation in a bathroom. I wore a respirator while working in there, removed the walls down to bare studs, and treated the whole room with highly a concentrated bleach solution. I had no symptoms from this. I have also, from time to time, had to use alkyd based paints or petrochemical based solvents to refinish furniture or cabinetry. Again, no immediate symptoms from any of these. I worked most of my career in office environments, mostly newer buildings (though the building I worked in when symptoms first developed was quite old and rundown). Now I work mostly in K-12 schools, which of course have extremely high standards for environmental toxin levels.

(continued in follow-up posting)

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