Discussions By Condition: I cannot get a diagnosis.

Help........what is it???

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: marge24
  • November 24, 2006
  • 08:57 AM

Although I was diagnoised with Lupus just over a year ago I have deliberately chosen the "I cannot get a diagnosis forum" for a reason. My symptoms are joint pain (which also includes pain in my right thigh), numbness and tingling in my hands (mostly at night), skin problems, mouth ulcers, dry mouth, dry eyes, extreme fatigue, swollen glands in my neck particularly the saliva glands. I also have bowel problems (pain and diarrhoea sometimes bleeding) and pain around my right rib and back area. I see a Connective Tissue registrar for my Lupus and up until this Tuesday the diagnosis was SLE.
However, on Tuesday I attended only to find my doctor had moved on and I had a new one. All of a sudden the diagnosis has changed. He has said I have Carpel Tunnel in one wrist and has injected it, he has said the pain in one elbow is Golfers elbow and given me a support and also said I have Fibromyalgia and mild SLE.
I see an Oral Surgeon for the mouth problems and they think I have Sjorgren's Syndrome, but when they done blood tests they found I have raised iron so are investigating that now and have arranged a partoid Sialogram for the jaw pain. I am also being seen in the Gastro department for my bowel problems and Dermatology for my skin problems. Each department has their own set of notes and all have different opinions and in the meantime I feel awful and feel like I am getting nowhere. I feel that all these problems are connected to one illness but what? If only they would all talk to each other!!!! Has anyone got any advice or idea what the problem could be or am I just unlucky enough to have lots of problems. Sorry this is so long winded but it's difficult to explain it all in a nutshell........any help or advice would be welcome.

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6 Replies:

  • Look up thyroid symptoms. I would continue searching like you are, sometimes doctors need help and it sounds like you are the only one looking at it as a whole. I would even go to a Naturepath and get a salava test done, which can tell you more than a blood test. Prescription meds. can cause you more symptoms and problems if done with out proper diagnosis. Make sure you are in charge of you own healthcare and keep searching! Best Wishes!
    Pioneer 13 Replies
    • November 24, 2006
    • 01:11 PM
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  • Having multiple issues is not uncommon with Lupus. Do your doctors speak to each other? With the circumstances you are experiencing, I would highly recommend seeing doctors that are all affiliated with the same hospital system. This way the communication of information between the doctors will be more uniform as well as quicker and easier.
    Anonymous 42789 Replies
    • November 25, 2006
    • 02:23 AM
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  • Thanks for the advice so far......in answer to the last post believe it or not all the doctors are in the same hospital. It seems though that each department is only interested in their own particular field i.e. Rheumatology only interested in joint problems, Oral Surgery only interested in mouth problems. If only they would all get their heads together!!!!! Would like to hear from anyone with similar problems and to know what their diagnosis has been.
    marge24 3 Replies
    • November 25, 2006
    • 09:36 AM
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  • Have you been satisfied with your diagnosis of Lupus over a year ago? It is common for someone to be diagnosed with something and then when a new doctor/s comes along they take it upon themselves to draw up their own conclusions and then some years down the track after causeing greif and misery go back to the original diagnosis, not apologies to the patient. Was the treatment you were previously recieving for Lupus beneficial?Departments in hospitals do not work together, they are interested in sticking to their own limited budgets, and a lot of times (most times, hey lets be totally honest) are not allowed to investigate anything that is not in their field). Many doctors are feircly protective and proud and do not like to communicate with other doctors, this they see as a sign of others thinking them to be incompetent if they don't know everything or can't find answers - unfortunately that doesn't help us.With modern medicine the whole person is not treated, our different body parts are devided up into sections and the interection of hte who body not considered.Go to a naturopath for most of your symptomes and an osteopath may be helpful for your joint and muscle ailment. Acupunture is pretty good also as it combines Chinese medicines. Explain everything that is happening with the various doctors and how confused they are making you and your case.Until the doctors have pulled their act together, which may never happen, stick with your Lupus diagnosis even if it is just to keep your sanity.All the best,Agape,searchingsam.
    Anonymous 42789 Replies
    • November 25, 2006
    • 02:12 PM
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  • I have some of the same symptoms....have been Dx'd with Rheumatoid Arthritis. Are you on MTX? The mouth sores may come from that.
    Anonymous 42789 Replies
    • November 25, 2006
    • 11:28 PM
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  • Ive met several with Lupus..and those ones too had a heap of different things going on as well as having Lupus, so I think that's all common with Lupus as after all it is an autoimmune problem. One with one autoimmune problem, it's common to have other autoimmune problems.
    taniaaust1 2267 Replies
    • November 26, 2006
    • 08:30 AM
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