Doctor won't give me a firm diagnosis

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I am a 30yo female. I visited Australia in late August. I developed a cold my last few days there, but I pushed through the rest of the trip. When I came back, I felt odd (dizzy, nauseous), but my doctor brushed it off as jet lag. However a couple weeks later I developed more symptoms including intractable headache/migraine, low grade fever, continued nausea and dizziness, lack of appetite, malaise, fatigue, light sensitivity, eye strain, muscle weakness, neck pain, chest pain, insomnia, weight loss. At first the doctors told me I had a virus, but when my symptoms didn't improve after a few weeks, they began to doubt it. My Epstein Barr IGM lab was positive. All lab work was negative. CT scan, MRI, lumbar puncture all negative except my opening pressure on the LP was slightly elevated, so they diagnosed me with idiopathic intracranial hypertension (IIH) and began treating me for that. My infectious disease doctor then told me she believes I never had a virus, and only have the IIH. While I believe that can explain some of my symptoms, I believe it seems clear that I also have mono as well. Even my neurologists think so but won't confirm. In my own research, it even seems mono can cause IIH. I am just really confused and not sure how to proceed in my healing. I have missed over 7 weeks of work due to illness and I still feel horrible. Does this sound like mono? Has anyone else dealt with IIH?

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  • Posted

    Hi there,

    It certainly sounds like mono to me, and coincidentally I contracted mono in Australia at the end of August also (I'm an Australian but currently live in the USA).

    My physician believes mono would have been everywhere at that point as it was the end of winter. I also developed many of the same symptoms as you, and I'm still recovering 😦

    I'm afraid I don't know anything about IIH, but I hope you feel better soon!

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    • Posted

      Thank you so much for responding! i am sorry to hear you are sick too. What is your activity level like? Are you able to work? If I sit or stand too long I end up feeling very dizzy/sick.

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    • Posted

      It's only the past week that I've upped my activity levels as we've had family come and stay, but I'm being very careful to eat well and get enough rest (trying to avoid relapse).

      I have dizzy spells every day, especially if I go too long without eating. My appetite only really came back a couple of weeks ago. Prior to that I'd have an okay couple of days, then relapse and feel very sick/tired, then I'd gain ground again. It's so unpredictable. I still get a lot of muscle pain and joint pain and occasionally an internal 'shake', but at this point things are much better than they were those first two months - they were nothing short of hell. But i'm nowhere near where i was activity wise - I went from running kilometres every couple of days and walking pretty much everywhere, going on big hikes - to either lying in bed or sitting in a chair in the living room all day. I'm still too scared to try and do more!

      Work-wise I'm able to sit at my computer and concentrate for a few hours, but get fatigued after that (lots of eye strain as well).

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    • Posted

      I am glad to hear you are starting to feel better. Activity-wise I am stronger than I was a few weeks ago (difficult to leave bed) but still able to do very little, especially due to the dizziness. I have been driving short distances and taking short walks when i can. I am mostly in a bed or chair too! I want to get back to work as soon as possible. Wishing you the very best as you heal. I appreciate your responses.

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  • Posted

    hey there. So sorry you were going through this awful virus. It is the worst! Because you have an Igm positive for EBV that shows a current active infection with EBV and that is the number one cause of mono. Any doctor here where I live in the US would consider that positive for mono. I’ve been dealing with it for a little over two years. And we just found out that I have severe cervical stenosis so now I’m seeing a specialist for that. I think anything that can potentially crunch your brain /brain stem or spinal cord can cause a lot of the lingering symptoms. especially anything affecting your nervous system.

    If you can look up Jennifer Brea. She made the documentary Unrest about getting chronic fatigue syndrome after a viral infection. Turns out she had cranial cervical instability and had a fusion surgery and most of her symptoms resolved after seven years of being sick. Not sure if that pertains to what you’re going through but it might. Hang in there! You're pretty early in the sickness and it might just resolve on its own in a month or two!

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    • Posted

      Thanks for the information! I thought that meant i was positive too. It seems that this virus can lead to different complications for different people. i wish you the very best in your healing. Thank you for your encouragement!

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  • Posted

    ive HAD many drs say that I AM NOT SICK including an ER visit !!!! only one an OB GYN ordered the test for me and yes i have epstein barr / mono . my family dr dropped me as she doesnt believe in it and looking for a new dr ...???? many dont either!! i have been SO SICK 19 months in BED !!!! thats real folks ! I have seen HELL!!!!! the worst of the worst !!

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  • Posted

    hey, your story sounds like mine. also never formally diagnosed with mono but docs though it was some sort of virus. click my username for more info, hope it helps

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