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@becsbuddy
Last November I was having some double vision in my left eye and some dizziness. Brain MRI showed inflammation. Was in the hospital for a couple of days for testing, All of my symptoms were gone and I felt fine before I left the hospital I had no treatment or medicine. I followed up with Neuro at Duke 2 weeks later, and told they were not sure what it was, but started me on high dose prednisone. After 3 weeks started having back pain and night sweats, with no explanation, remained on prednisone for 3 months then switched to Mycophenolate. I actually did not feel bad until after taking prednisone, but no one has an explanation. I did have a positive TB test before starting prednisone, said it was Laten TB. Infectious disease would not treat it until I had a second positive test but both times repeat tested I had been on prednisone or Mycophenolate, so not sure they were valid. But they do say don’t think it’s TB, but don’t know what it is. I am going to get a second opinion at UNC and talk about getting off Mycophenolate. Any suggestions or advice?
Thanks,
Deb
Replies to "@becsbuddy Last November I was having some double vision in my left eye and some dizziness...."
@ebjj4health
Consider seeing an ophthalmologist for the inflammation. I had similar symptoms and some additional ones. I too was admitted to the hospital as a result of upper, outer vision loss. Multiple tests were done with no diagnosis. Stared on 40 mg of Prednisone. I was seen at Duke Eye Center who promptly sent me to the ER with suspected Giant Cell Arteritis (not arthritis). I was evaluated and an appointment was made to see ophthalmology in the office. I ultimately had a temporal artery biopsy which was positive for GCA, an autoimmune disease. This is considered an emergency in Opthalmology. I am currently being seen by a rheumatologist who manages my care. Every physician I have seen has instructed me to immediately go to an ER as
to avoid further vision loss. This is not to frighten you but to consider a diagnosis that isn't often considered. I hope you find your answer. Be well.
@ebjj4health Have you been tested for Giant Cell Arteritis? Do you have any jaw pain when you eat? Balance issues?
Good luck! Be,well!
@ebjj4health
Was your TB test a blood test or skin test? The skin test gets false positive results.
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@ebjj4health I sure hope that the doctors can figure this out soon! You’ve just been through the wringer! You might want to ask about a 2nd opinion or at least have 2-3 doctors agree on what it is. But, it may not be necessary ! The docs at UNC are probably smarter and able to keep up with the latest journal articles. Will someone be able to go with you? Be sure they know what you’ve been going through so they can add comments (when you forget) or ask questions and take notes. You will have a notebook with all your questions written down and so you can write what the doctor says. Some doctors are even comfortable with the session being taped, if that would help you. But the taping shouldn’t replace your note taking! Most doctors like it when you pull out your list of questions. Think of this like a job interview—an interview on caring for yourself!