Health decline precipitates advanced medical appointments

Wow. My previous post was dated 6th February. I knew that I hadn’t been blogging for some time but did not actually check the date until now.

My condition has deteriorated. But like how it was since December, my discomforts were not evident outwardly. People say that I look very good and happy. I’d attribute that to my daily facial regimen and being in love.

Anyway, since the local neurosurgeon I consulted was sure as hell he could tell which brain tumor was causing my decline merely through the CT scans while my US neurosurgeons insisted that they could not, I thought of seeking a second opinion from NF specialists at Harvard. But preparing to see Harvard doctors took up too much time and my condition declined in the process.

I started to experience an increase in head pressure sometime around Valentines’ Day, followed by a feverish sensation and diarrhea. Following these developments, I went to see my family doctor who is a general practitioner in a neighboring city. He prescribed me medications – first for fever and pain, then for diarrhea and wind. When these finished, I went to see him again. The diarrhea was gone, but the headache and feverish sensation persisted so he gave me medicine for fever and pain as well as antibiotics. But when even these finished, the headache and pressure persisted so I went to see the same neurosurgeon whose opinion did not change – he still thought that tumors in my ventricular system were the culprits.

When I came home from hospital that day, I sent an email to the team at the U.S. National Institutes of Health informing them of my decline and requested to be seen sooner than we had originally planned. So this Monday, my companion and I will be flying off to L.A. and then take a connecting flight to Washington Dulles before riding to the NIH campus in Bethesda, Maryland.

I will have late night MRI appointments between next Monday and Wednesday. Night because they are squeezing me into their already-planned schedule. We will be doing a full brain MRI assessing for hydrocephalus, an MRI of the orbit assessing for intra-cranial tumors that might explain my vision disturbance, and an MRI of the spine assessing for the cause of urinary incontinence. I will also be seeing a neuro-ophthalmologist at the NIH because Dr. Kiew Chit Chua of Assunta Hospital found that 90% of my right optic nerve fibers have been destroyed when I saw him hoping that we could see whether there was hydrocephalus through my eyes. But he couldn’t, due to the condition of my optic nerves.

Hopefully, we will be able to pinpoint the cause of my decline and treatments can be carried out at the NIH.

Au revoir mon ami!

P/S: More often than not, we can only know what’s happening when our condition has developed to a certain degree of severity.