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Doctors cannot figure out what is wrong (1.5 years) - unsure what to do

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jlee123
jlee123

Hello! In March of 2017, I traveled to Curacao and came back with stomach pains and diarrhea. That pain was very bad so I went to the ER and was told that I had travelers diarrhea. The pain did not subside, so I went back to the ER and was told that I had appendicitis. I got an appendectomy, but the pain in the stomach continued. I went to a GI doctor at Penn, and had numerous tests done - Upper tract with small intestine follow through, colonoscopy, endoscopy, small camera swallowing test, nuclear medicine x-ray, etc. The doctors concluded that I had GERD. This was over a 6 month span. At times, the pain was so bad that I would not be able to move - with movement, it was a sharp pain in the middle of the stomach area. Again, I went to the ER and was told it was endometriosis. I had a follow up with GYN and was told that was incorrect. The stomach issues somehow resolved itself and subsided. March of 2018, I was back in the emergency room with a swollen nose (under the bridge of the nose) and unable to open my eye. CT scan showed chronic sinusitis and I was sent to Wills Eye for my right eye. IT was bright red, tearing, and in incredible amounts of pain. I was diagnosed with scleritis. They started me on flurbiprofen and drops in the eyes, but it was not going away, so I was put on 60 mg of prednisone. I was on this for about three months (tappered off). In the midst of this, I went to rheumatology and was put on methotrexate. I had a horrible reaction so then put on imuran. I am now off of prednisone, my eye is okay, and taking imuran.

I now how horrible pains that move around in my hands, sometimes two fingers on left hand, other days, the whole right hand. It feels like my fingers are broken and I have trouble washing myself, dressing myself, etc. Most recently, it moved to my ankles, causing me to have to stay in bed and unable to walk. I have been on imuran, and was told to just take 2400mg of ibuprofen (3 times a day, 800mg) when I was having these 'flare-ups'. The ibuprofen helps, but then the pain will come back. 

I am 24 years old, do not drink or take recreational drugs. I was in great health and very active prior to the March 2017 Curacao trip. It feels since then, my health has been deteriorating and my quality of life has significantly gone down. I've been to numerous specialist, gotten many labs done, but the doctors are unable to figure out what is wrong. Hoping to see if anyone else is able to recommend anything or shed some light onto what may be happening! 

0 likes, 3 replies

3 Replies

  • kazzy70
    kazzy70 jlee123

    Posted

    Hi, sorry to hear of your health problems after your trip, I just found this about Health on a UK site, not sure if it will help but I'll paste it for you below.

    Health

    Visit your health professional at least 4 to 6 weeks before your trip to check whether you need any vaccinations or other preventive measures.

    Check the latest country-specific information and advice from the National Travel Health Network and Centre (NaTHNaC) on the TravelHealthPro website or from NHS (Scotland) on the fitfortravel website. Useful information and advice about healthcare abroad is also available on the NHS Choices website.

    UK health authorities have classified Curaçao as having a risk of Zika virus transmission. For more information and advice, visit the website of the National Travel Health Network and Centre website.

    Cases of Chikungunya virus have been confirmed in Curaçao and the number of reported cases in the region is increasing. You should take steps to avoid being bitten by mosquitoes.

    The European Health Insurance Card EHIC is not valid in Curaçao. Make sure you have adequate travel health insurance and accessible funds to cover the cost of any medical treatment abroad and repatriation.

    If you need emergency medical assistance during your trip, dial 911 and ask for an ambulance. You should contact your insurance/medical assistance company promptly if you are referred to a medical facility for treatment.

    Just wondering if it was mosquito related, or even ingesting some form of worm, as has been known to cause allsorts of problems.

  • danielle61048
    danielle61048 jlee123

    Posted

    Have you tried an immunologist?

    I have some of those same issues, I'm curious as their findings....but yes, it's frustrating how Doctors diagnosis flip and flop.

    For example, I suffer from migraines, as well as my many other issues.

    I seen an eye Doctor who suspected I Macular Degeneration. He sent me to an opthalmologist who said, no MD, he suspected I had a Brain Tumor. so I was sent to a neurologist who said I had a Brain Tumor. I sought a second opinion, with the same MRI, who said no, you have age spots and scaring. So I gave up....

    let me know how your go...very interested.

    • margaret_53580
      margaret_53580 danielle61048

      Posted

      hi /danielle61048-1047256

      well there is an old saying

      DOCTORS DIFFER PATIENTS DIE!!!

      says it all l really good luck

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