Discussions By Condition: I cannot get a diagnosis.

My body hates me...HELP!

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: eukepepper
  • January 22, 2008
  • 10:06 AM

I'm hoping someone has some ideas in what direction I can try next. I apologize, this is long. I initially tried keeping it short, but gave up and just let it run to two posts. Please just bear with me (curse my wordiness if you want). I have an abbreviated list of symptoms at the end. I'm not sure if this is one, two, or more problems. But I'll list everything.

I'm a 22 year old (23 next week) female, 5'4", 97 lbs. I am generally fairly active; between work and "play" I am always walking/running/lifting/climbing/hauling. Or am when I can. I exercised at a gym this past summer around 4 times a week, but am no longer able. I am not, and have never been sexually active.

1/1/02, I was having breakfast with a friend when I was suddenly extremely nauseous. My heart was racing, and I got very lightheaded. After a couple of minutes, my heart and head settled, though my stomach took much longer. I was able to finish my meal, but I had to force it down. This went on every time I ate (with a couple of random exceptions). Over the next couple of months, I saw three or four different family doctors. All of them started out fine, but ultimately ended up totally disregarding my complaint as if I was making it up. Most said it was stress and left it at that.

I had been working on a play, and it finished, along with semester finals. I was at about as low-stress as I could get. But it actually got worse. Instead of fading after a while, sometimes the nausea would just keep going. There were weeks when I was constantly nauseous. The only relief I found was sleep and not eating long enough for the nausea to fade. I fluctuated between 105 and 109 lbs. throughout high school, even with the stomach problems.

When I left for college, the nausea persisted, though it had been relatively calm the summer before. In my first year of college, I dropped down to about 100 lbs. Second year ('04-'05) I dropped below 100, and have since rarely been able to get it above.

I had a number of tests run, through different labs. We spent some time working at a lyme diagnosis (though I have never been bitten by a tick, and they are extremely rare around where I live). My doctor was rather obsessed with that at the time (when she felt it wasn't all in my head). Needless to say, we exhausted that option. She sent me to an allergist, for a possible food allergy. Only thing I reacted to in the skin ****k panel was ash trees (which was mistakenly pricked instead of almond). Finally, she sent me to an gastroenterologist (only took her 5 years to figure out she had no clue what she was doing with me...why I didn't just dump her, I don't know).

Gastro had a few ideas. Celiac disease was his primary concern. Bloodwork showed negative. Chronic giardia was his next idea, which is actually very likely, since a nearby lake that I visit regularly is known to have issues with it. I was put on Flagyl for a two week trial. After ten days, it proved to be making me even sicker, and he pulled me off of it. Obviously not giardia. He did an endoscopy. My stomach was very happy looking, physically. He found nothing wrong.

We checked my gallbladder with a HIDA scan. Not only was my gallbladder functioning, it was just as over-achieving as I am, with a very high rate. Abdominal ultrasound looked normal as well. Finally, the gastro told me to try fiber, since it was probably an abnormal manifestation of IBS.

The fiber had a teeny, tiny beneft for about two months. Or rather, it did right away, then nothing changed for about two months. Then I got extremely sick one night, and it was fairly clear to everyone around me that I have a bigger problem with lactose intolerance than was thought (cheese enchiladas for dinner). I've known for some time that milk bothered me. But after some work, we discovered that I was "reacting" to even very small amounts. Heavy monitoring of my dairy intake and lactase supplements helped immensely. Not entirely, but enough to be able to function for the most part. Before, I had already been driven out of my 4-year university and to a less demanding 2-year program, with a semester off in between.

That lasted about 6 months. Then new things started cropping up. I was working in a retail job, and it was the holidays. So I initially attributed the intense fatigue I began feeling to that. I can't really say when it started. Sometime around Thanksgiving, I think. Around New Year's, various joints began aching. Worst was my right knee, which I have had problems with since dislocating the patella in June '99. It began dislocating again. I couldn't make it through an 8 hour shift without ending in excruciating pain. Through the spring semester, the fatigue (main problem) and the pain forced me to choose between work and school. Since I needed the money, work came first. I failed half my classes, and compromised a C for the rest. Once upon a time, I was an A student, with a very physical reaction to a fear of failure (read: less than a B). Luckily I had all those stomach problems to get me over that fear and just accept that sometimes life sucks and grades aren't indicative of my intelligence.

I moved back home after the semester, in May '07. Incidentally, that was the last time I had a period. It's been nearly nine months. Though, perversely, I'm not all that upset about it. When they used to come, I would spend 3-5 days curled up in pain, sick to my stomach. I don't miss it, except for the normalcy factor. Over the summer, I began having dry skin, mouth, and eye problems. Not severe. It's NOT humid here, though not entirely arid either. But I was reacting slightly more noticably than normal.

Backtracking, I was "diagnosed" with fibromyalgia in the spring. By diagnosed, I mean: my doctor figured on one of three things being the culprit. Lupus, RA, or fibromyalgia. My ANA, sed-rate, and Rf were normal, as was an x-ray of my hand (pick a joint, any joint, and that's what hurt that day). So he (note "he", I finally got rid of the impotent earlier doc) ruled out lupus and RA. He admitted to using fibro as a garbage can diagnosis. I have NO tender points, and the only muscle aches I get are from something I did physically or because of how I was compensating for aching joints. He put me on Elavil (amitriptyline) 10mg/day. It helped send me to sleep at night, which was nice. We gradually ramped up the dosage to 60mg/day. The only thing that accomplished was a case of RLS every time we changed the dose. I also had very, very lucid dreams. No nightmares, though, so it wasn't really a problem. However, the pain was still there, and the fatigue wasn't really gone, just better scheduled. So I stopped the Elavil, and he tried Neurontin. After a week, I went in for a follow up. I had been on what he felt was the minimum dose that would have ANY effect. It didn't help at all, but I couldn't sleep at night for the hallucinogenic dreams I was having. He immediately pulled me from it. This left me completely unmedicated. If the pain gets too bad, sometimes I'll resort to NSAIDs and Tylenol, but I have to take such a large dose of so many to feel ANYTHING that it's not worth it. It's more a psychological benefit than anything else when I do resort to them. I haven't since September, though.

I was sent to a rheumatologist. She did a full work-up on me, and ordered an antigliadin AB panel (IgA and IgG antibodies), a Wallingford IgG food panel, and a re-test for celiac (blood). All came back normal, with the exception of a high result for black pepper. She didn't suggest anything other than to follow up in 6 months (March) and probably check in with an endocrinologist, because of the lack of periods. She also noted MVP, though no murmur, and said it was too mild to worry about. She also said the fibromyalgia diagnosis is pretty much rubbish, though we kept it because it makes me feel better to be able to say SOMETHING is wrong. Even if it isn't right.

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