Discussions By Condition: I cannot get a diagnosis.

Help! I need to find an answer so I can move on with my life!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: latejuly
  • May 8, 2008
  • 03:07 PM

The past 5 years have been a nightmare... it has now come to the point that I can not work and had to postpone finishing my degree. I'm just sick all the time.

It started by getting this attacks of fatigue, diarrhea, nausea. I get so weak I can't walk, I crawl around not in pain but in total discomfort like I'm going to be sick to my stomach but I never throw up. I've been to gastros and ruled out Crohn's colitis, but it's not the diarrhea that's the problem. My mom has Addison's disease, and no other family history.

I'm desperate... these are my symptoms if anyone can guide me in the right direction. My doctor says because i'm a young, female that most specialists aren't going to take me seriously. 35lbs is a lot of weight to lose and I keep losing weight, sometimes 10lbs in a weekend (which is mostly fluid). Anyways.. I'm stuck. I know I'm not the only one :(

• Diarrhea (watery, and lose bowels sometimes with out warning.
• Extreme fatigue
• Nausea & Dry heaving
• Muscle Aches
• Swelling pain, and stiffness in abdomen
• Dizziness & Shakiness
• Chronic weight loss (i've lost 35lbs)
• Multiple canker soars in mouth (tongue, gums, inner lips/cheeks)
• Faint
• Low grade fevers
• Lack of appetite
• Muscle twitches
• Inappropriate sweating
• Loss of bowel control
• Numbness in hands
• Boils on my face that swell up to the size of a quarter
• Fogginess in thinking
• Heart Palpitations
• Random swelling of lymph nodes under arms

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3 Replies:

  • Okay, I'm no doctor...but have you tried acupuncture???? I've been dealing with some fatigue issues and it's helped but not cured me.Just a direction :)Becca
    Rebecca1176 1 Replies Flag this Response
  • Sorry, this is probably terribly obvious and goofy, but I didn't see you mention it so I thought I'd bring it up - have you been to see a gastroenterologist? There are lots of other tests that should be run, given your symptoms, and they'd need to be done by a specialist, not your primary care doctor. Your case sounds kind of familiar to something I went through a few years ago. It took me a while to be diagnosed, and my primary care doc tried to play the hero and do all the tests. When I finally went to a gastroenterologist, I had a colonoscopy and an endocscopy done and it turned out I had ulcerative colitis. There's not really any definitive way to diagnose that without visualizing the intestines through those two procedures. I'd really, really recommend you see a gastroenterologist immediately if you haven't already.If you have already, go see another one. A second opinion always helps.And if they don't believe you cause you're young and female, forget them! I'm so tired of doctors who behave that way! I'm 23 myself and I've faced that a LOT; it's really stupid. Young people aren't invincible! I'd recommend finding a female doctor, they tend to be more likely to listen, but it's sadly not a guarantee.If you have seen a gastroenterologist, it's kind of a wild stab in the dark, but what about an endocrinologist? Lots of endocrine disorders/diseases can cause gastrointestinal problems. Hope this helps! Good luck!
    HeatherShow 19 Replies Flag this Response
  • Have they checked you for celiac disease yet? It could explain a lot of your symptoms, if not all. Celiac disease is an autoimmune disorder where you can not handle gluten, a protein found in wheat, rye, and barley.The first tests they may start out with are anti-gliandin or anti-endomesial antibodies. They may also check you for IgA deficiency, or HLA subtypes DQ2 and DQ8. The gold standard for diagnosis is biopsy of your small intestine (the biopsies are taken during an upper GI scope).Celiac disease is an autoimmune disorder. Since you have a family history of Addison's, they really should be making sure you don't have celiac. If you have celiac, you might want to be checked for autoimmune thyroiditis, which could also explain some of your symptoms. They often go hand in hand.It can cause most of your symptoms, including the mouth sores (apthous stomatitis).Whatever this is, please don't let them tell you it's no big deal. Your symptoms are bothering you and should be taken seriously.Best Wishes.
    Anonymous 42789 Replies Flag this Response
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