Discussions By Condition: I cannot get a diagnosis.

At a loss..joint pain, rash, edema..Please help!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: rockexrolloh
  • October 3, 2008
  • 04:14 AM

My mom has been trying to find a diagnosis for almost 2 years. We are at a loss on where to go from here. She is 46 and has had mild joint pain for quite a while but it has never been this bad and accompanied by these symptoms.

Besides joint pain, she has joint stiffness, especially in the morning. Her bilateral hand grips are weak. She constantly has edema in her lower extremities. She has also experienced anemia and hair loss. She does have a history of ulcers and has GERD. The doctor suspected the anemia could be caused by GI bleeding but it was not confirmed. Occasionally, she complains of kidney pain but BUN and creatinine tests have come back normal. She also has hypertension and is currently on medication. This does run in her family.

Within the past two months, we have noticed that a reddish rash will pop up on her arms out of nowhere. In fact, we were shopping and her arm looked fine; ten minutes later she looked down and noticed there were small dark reddish/purple spots on her wrist. It is usually always on her wrist or forearm. The spots disappear in a day or two. I believe it is petechiae.

The last test results that I have show her hematocrit, hemoglobin, mean corpuscular hemoglobin concentration, and red blood cell count are low. Her sed rate is high at 49. Her T3 levels are also high at 2.11.

I feel that she has lupus but we have been told by two different doctors that they don't think so. The first was a rheumatologist who said she did not have rheumatoid arthritis but went back and forth with lupus as a diagnosis for 3 months. She switched doctors and was told she has adrenal gland failure but we have gotten nowhere with that diagnosis. I have seen nothing to back up this diagnosis or heard any explanation for it.

She has been on Prednisone for over a year and claims it has helped somewhat but not completely and we are still at a loss for an underlying cause.

Does anyone have any advice on what could be going on or what tests could be done to focus on a diagnosis?
Any advice or comments would be appreciated.

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6 Replies:

  • Please check out the web site: www.LymeNet.org for information on Lyme disease and other tickborne diseases. Testing with Igenex is the best way to figure this out. You have to get a doctor who will allow this lab. If you cand find a LLMD, a Lyme Literate Doctor, he will allow you to test for Lyme and other co-infections. You could get some answers soon. Hang tough and fight to figure this out! Good Luck
    Anonymous 42789 Replies
    • October 3, 2008
    • 07:45 AM
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  • Sounds like Lupus, RA or thyroid problems. We can have more than one thing wrong with us at a time which makes it hard when you put all the symptoms together and they don't make sense. The edema I would check out the kidney's. Did doesn't sound like Lyme.
    CANDERSON 18 Replies
    • October 5, 2008
    • 04:24 PM
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  • I have to differ with you CANDERSON. I was diagnosed with Lupus and thyroid and RA but then testing would change and the doctors would rule those out. I was also dx'ed with MS and others. It took many, many years because most people(even doctors) don't understand just how many symptoms Lyme and other Tickborne infections actually cause. So yes, get tested for all those things... a doctor will probably do the testing for that. But if there is still no diagnosis, then look into Lyme Disease with a Lyme specialist. General docs won't do the sensitive testing and specialized labs. And in this fight, that is the best way to find out for sure what this is. GOOD LUCK TO ALL
    Anonymous 42789 Replies
    • October 5, 2008
    • 07:31 PM
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  • PS.adrenal gland failure or exhaustion can be very much a lyme thing. The fact that the doctors keep vasolating between RA and Lupus is very telltale. Lyme is not what doctors want to treat. It is very politically loaded right now. But you can find answers through a LLMD (Lyme Literate Doctor) and Igenex lab testing. General labs are great with other things, but right now, Lyme is tricky, so try the specialty labs ONLY if you don't find other answers. Just a note, steroids are very bad for lyme patients because they compromise the immune system terribly. They may help slightly for a time, but they are only covering up the inflamation, they are not helping. So keep your focus and look into as many things as you can. I wish you much good luck for you and your Mom.
    Anonymous 42789 Replies
    • October 5, 2008
    • 07:36 PM
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  • I strongly agree with Light!! You can have other tickborn infections and not have Lyme, so please learn abt them. Most drs only test for Lyme.Look into mycroplasma infections too.Best Wishes~~JerseyLymie
    Anonymous 42789 Replies
    • October 6, 2008
    • 11:41 AM
    • 0
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  • Could be celiac disease. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies
    • October 7, 2008
    • 07:52 PM
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