Discussions By Condition: I cannot get a diagnosis.

Feel hopeless...undiag autoimmune

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: mforbes1974
  • January 12, 2007
  • 04:54 PM

Hello...I have posted a few times in other categories, but have had no replies, so maybe this one is viewed more frequently. My problem is that I have alot of symptoms, started out mostly joint related in my wrists, then hands, elbows, ankles, feet. I even broke my foot last march simply because my ankle gave out. My symptoms have since progressed with excessive fatigue, rashes, skin and scalp lesions, hypermobility in my fingers, sometimes hands clench up. I have alot of lowgrade fevers, some chest pain, difficulty breathing, stabbing pains in hands, feet, and now in my eyes occasionaly. I was tested for most autoimmune diseases about 6 wks ago, and the results were neg when I got them few days ago, but am sooooo much worse now than when they took the blood. I was convinced that it had to be lupus, RA, etc. I am desperate for a diagnosis, because I am really scared at the way this is progressing. The one Rheum Doc I went to was awful and made me feel crazy. He only seemed concerned with the tests and not me or any of my symptoms. How sick do I have to get before they take me seriously???? Isn't it possible to have an autoimmune disease and not test positive for it right away? PLEASE HELP!:(

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  • Hello...I have posted a few times in other categories, but have had no replies, so maybe this one is viewed more frequently. My problem is that I have alot of symptoms, started out mostly joint related in my wrists, then hands, elbows, ankles, feet. I even broke my foot last march simply because my ankle gave out. My symptoms have since progressed with excessive fatigue, rashes, skin and scalp lesions, hypermobility in my fingers, sometimes hands clench up. I have alot of lowgrade fevers, some chest pain, difficulty breathing, stabbing pains in hands, feet, and now in my eyes occasionaly. I was tested for most autoimmune diseases about 6 wks ago, and the results were neg when I got them few days ago, but am sooooo much worse now than when they took the blood. I was convinced that it had to be lupus, RA, etc. I am desperate for a diagnosis, because I am really scared at the way this is progressing. The one Rheum Doc I went to was awful and made me feel crazy. He only seemed concerned with the tests and not me or any of my symptoms. How sick do I have to get before they take me seriously???? Isn't it possible to have an autoimmune disease and not test positive for it right away? PLEASE HELP!:( This sounds exactly like my daughter. She has had two bouts of what you're describing - at age 8 for 3 months and then age 13 for 6 months. Diagnoses ranged from fibromyalgia to mental illness after visiting multiple various specialists including orthopedists, rheumatologists and neurologists. She was even in a wheelchair for 4 months due to injuring ankles plus one knee on both legs at the same time. The only reassuring thing is that both times after intense rehab and pain management, she has gone into remission. She was admitted to the hospital for 8 days of testing the second go round (becoz she developed a myoclonic tremor in one ankle) and was tested for everything. The only thing that was found were slight erosions on her jejeunum (middle intestines) that might have prevented proper absorption of essential enzymes and minerals (blood tests were always normal, but she had had stomach pains after eating certain food and has always been underweight). Since then she has been taking nexxium and super multi-vitamins and not had a relapse (has been two years). I think there may be a connection becoz she did suffer a slight sprain after skipping this regimen for a few weeks. We have eased up on the nexxium, and she continues to do well.Good luck!
    Anonymous 42789 Replies
    • January 12, 2007
    • 09:38 PM
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  • Thanx for your input! I hope your daughter continues to do well. I had an ulcer and was diagnosed with GERD (acid refluf disease) about 10 years ago. I was taking prevacid ever since until about 2 yrs ago when my insurance quit covering it. I now take Prilosec OTC daily and it works almost as well. I do have an appt to see a gastroenterologist soon as well. So we'll see if there's anything else wrong in that area. Thanx again:)
    mforbes1974 6 Replies
    • January 12, 2007
    • 10:09 PM
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  • Read the Book "Never Be Sick Again" by Raymond Francis- it was the best prescription my doctor has given me. I had to drop my studies because I was to sick to get out of bed. I thought I was going to need an astronaut suit to go on with my life- talk about auto immnune :pAlso readhttp://www.gloriagilbere.com/InvisibleIllnesses.htmhttp://www.beyondhealth.com/articles.htmhttp://www.ourlittleplace.com/jackimcs.html
    Anonymous 42789 Replies
    • January 12, 2007
    • 10:18 PM
    • 0
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  • You're welcome! The reason I specified the jejeunum is that the problem was only picked up after an abdominal CT scan showed a prob. Prior Colonoscopy and esophogeal tests showed nothing, but I was convinced she might have celiac disease and insisted on the scan since she was already undergoing so much testing while we were at the hospital. The jejeunum is an impossible place to see using standard tests. She eventually swallowed a video-pill which confirmed the erosion. The tests for celiac came back negative, so what she may be allergic to I have no idea (and now that things have calmed down we'll have to explore that). She has had GERD issues since birth and stomach pains since she started to talk and was able to express it. She also was short stature and underweight. After treatment with just nexxium and vitamins she gained 20 pounds over the next 2 months and has grown 4 inches over the last 2 years. Remember, the Prilosec just treats symptoms and doesn't "heal" the problem (like the commercial says). I'm highly suspicious that this may be a GI issue for you as well, now that I hear your history. Celiac disease is grossly undiagnosed and might be an easy screen for you to undergo - you can even do the test yourself at home - just google it if interested - insurance can be picky about covering it. And, even if you're negative, you can still then insist on the Ab CT scan, which will pick up any issues in the nether regions...
    Anonymous 42789 Replies
    • January 12, 2007
    • 10:42 PM
    • 0
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