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    Old 08-25-2015, 10:11 AM   #1
    Emt852
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    Cannot get a diagnosis.

    Hi everyone. Hopefully someone can help me because I don't know what else to do at this point. I am a 27 year old female with no previous health issues. In June I had an upper respiratory infection and was sick for several weeks. Shortly after I woke up one morning with numbness and tingling in my legs and left arm and very stiff painful joints. I was dropping things constantly and falling. I felt very week and uncoordinated. I was hospitalized for 4 days and has a multitude of tests including CT, MRI and lumbar puncture. Everything was normal other than an increased percentage of leukocytes in my CSF.

    After several weeks the numbness/tingling/nerve pain stopped. I am now just having severe stiffness and pain in all of my joints (never an inflammation). Heat intolerance. Dry eyes. Dizziness when standing up. I have white sores on my lower gums and have had strange red bumps that sporadically pop up on my arms and sometimes my legs. They do not itch but feel tender when touched. They take several weeks to go away. My rheumatologist tested me for RA, Lupus, vasculitis, and Srojrens. All negative. She says that I have post viral syndrome, however I am getting worse not better. It has been more than three months and I need some sort of answer. My fatigue and joint pain is so bad that I can barely care for my two young children. Thanks for reading.

    Last edited by Emt852; 08-25-2015 at 10:27 AM.

     
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    Old 08-25-2015, 07:09 PM   #2
    ladybud
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    Re: Cannot get a diagnosis.

    Hello, and welcome to the boards! I hope you find some help and support here. The story you share makes me wonder about a few things. Was your respiratory perhaps Epstein Barr or Cytomegalovirus? (mono) You may not have been tested for those at the time, but could be tested now to see if antibodies show up to either document past infection or recurrent viral activity. Parovirus is another one that can cause similar symtpoms and be tested for. Even though you see no signs of inflammation in joints, there are blood tests (sed rate and CRP) that can show inflammation, and are worth doing. Some lupus patients develop symptoms after Epstein Barr virus infection, (EBV), and lupus should certainly be considered and tested for periodically, like every 6-12 months if symptoms persist. The rash could be signs of vasculitis, and a dermatologist should be consulted for a possible biopsy of a lesion. High white cell counts in cerebral spinal fluid can occur in several kinds of meningitis, but particularly aseptic ( no germs involved, just inflammation) can occur in lupus and some of the mono causing viruses (EBV and CMV). This all seems related and someone should be able to figure this out with appropriate labs. Some of the mono viruses can take 3 months to resolve, but you deserve some answers as to what is going on now that you have been sick 3 months and not getting better. Good luck and I hope you'll keep in touch with us.

     
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    Old 08-25-2015, 07:38 PM   #3
    Emt852
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    Re: Cannot get a diagnosis.

    Thanks for your reply. Unfortunately I've been tested for EBV, cytomegalovirus and lupus. My ESR and sed rates have been normal. I've also been tested for vasculitis. Not sure what to do at this point.

     
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    Old 08-27-2015, 09:01 AM   #4
    ladybud
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    Re: Cannot get a diagnosis.

    Unfortunately, early on in some autoimmune illnesses like lupus, blood tests are negative. They can take months or even years to turn positive after symptoms begin. This leaves everyone very frustrated. It is worth asking for these tests to be repeated every 6-12 months if symptoms persist. I wonder when you were in hospital if strept cultures were done of throat and ASO titers were done? ASO is an antibody to strept found in blood, and rheumatic fever is often not thought of, but still occurs, which includes arthritis following a URI. Your gum sores may be a sign of autoimmune disease as well, and should be shown to your Drs. when you see them. They are an important part of the history of this illness. In the meantime, an anti-inflammatory med like Ibuprofen or Naproxen should help the joint pains, and both are OTC. I hope you get better, but if not, I hope you get answers soon. Sometimes, waiting to see how things evolve is the only thing you can do until more specifics evolve. Hang in there!

     
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