I went to the nephrologist Saturday evening with the isotope bone scan report. He echoed the thoughts of the bone scan consultant. "Nothing more than what we already knew". "Crap!", I thought to myself. Both of us were perplexed! What could be causing this severe bone pain? He thought this through. He then said maybe we should wait it out. Maybe the active Vit D deficiency, the Calcium - Phosphorus imbalance and the PTH need some time to settle down. We were addressing these three things already. I was adding a Phosphorus supplement to my dialysate. I was on a Vit D supplement. In addition he asked me to switch back to a normal Calcium dialysate from the low Calcium version I was currently using.
He also asked me to stop Cinacalcet. My PTH was 179 last. He did not want the PTH to be below around 250 or 300. So, he asked me to stop Cinacalcet. I asked if Vitamin C deficiency could cause this pain (as suggested by a friend from Bangalore in the comments to my earlier posts). He doubted it because he said I was having a normal diet. However, he asked me to try a Vit C supplement because there was no harm.
We agreed to watch for a while. As I got up to leave, he asked me if the pain was getting better, worse or was the same. I told him that it was getting worse. He was genuinely worried. He thought about it for a while. He did not know what to do. He was wondering if an orthopedic consultation would help. Perhaps a neurologist could add some light? He thought orthopedicians rarely dealt with renal cases. He suggested a neurologist consultation.
So, that's where we are with the bone pain. All the tests have yielded nothing. My only hope is a post on the 'I Hate Dialysis' forums in response to a question I had asked about the time the bone pain takes to resolve once a Vit D supplement is started. Most people said a couple of months. One person however said it took four months for her. This gives me hope. Hope that the pain should resolve in four months of which two months are already over.