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A late diagnosis is frustrating me. 🙁
I had a spinal tap on New Years Eve for possible IIH. My opening pressure was normal, but then there were the blood tests. I received a call from my neurologist’s office the following week to let me know all of my spinal tap results were fine. I asked the nurse if the doctor had reviewed my blood work results that had been sent to me the previous evening. I’m no doctor, but I do know how to google. As far as I could tell, my results were positive for Lupus. I explained that my mother has Lupus and she had been comparing all of my symptoms to her own for months now. All nurse could say was that the doctor had not reviewed my blood work results and they would have to get back with me the following day. The day came and went with no call. I had an appointment with another doctor, so I sent him the results thinking he could explain it better than google. Nope. He told me that it might be indicating some early on set rheumatoid arthritis. I thought that was strange since I tested negative for rheumatoid arthritis in those same blood work results. I moved on in assumption that I was just reading too many medical websites. 42 days after my spinal tap, also after another physical visit to the neurologist, I got an unexpected call. They finally realized that no one called to tell me that I did in fact test positive for Lupus and now they would like to refer me to a rheumatologist. I know I should be grateful for a diagnosis, as some people wait for years, but I’ve been appealing my short term disability case and I’m down to a matter of days before I’m out of time to gather all of the documentation. Wouldn’t you know that the neurologist’s office has failed to fill out the physicians statement for weeks now. I have called, my rep has called, I even physically walked in a blank copy along with a copy of what my primary doctor had written, so they could better understand my history. I was promised by the nurse practitioner that she would fill it out over the weekend. She didn’t. When I called to check on it again the receptionist let me know that they still had the blank copy I provided last week. As much as I hate to waste my mental energy on it all, my anxiety has a hold of me. Can’t sleep. # #Anxiety #Lupus #hyperadrenergic #LivingWithPOTS #PanicDisorder #Depression #Labyrinthitis #IrritableBowelSyndromeIBS #GastroesophagealRefluxDisease
