Having previously had kidney cancer and being very badly treated as regards information being withheld from me to my great disadvantage, I am sensitive to not being fully informed.
I therefore applied for my medical notes and now have a much better idea of the illness I have. As a matter of courtesy I wrote to the Consultant pointing out that I had discovered detail from a 'stand in' GP about my illness that I had known nothing about and this was why I was doing it.
I have no wish to engage in an argument with the Consultant as things only got worse with regard to my kidney cancer. though she did kindly write to me, and some of her assertions don't accord with medical texts, but it's not my place to prove I'm a smarty pants.
These are relevance details extracted from my notes.
Sfllc 109.0 – – 110.0 – 132.0
Ratio * – – 0.01 – *
? = Due to low albumin excretion, unable to calculate ratio.
CTI scan
Ignoring mention of cysts and other detail the main significant comment is
?Spinal extra dural meningeal cyst at T10/T11 on the right. Disc prolapse at L5/S1 causing compression of the exiting nerve roots bilaterally There is also a posterior disc/osteophyte complex at C11/T1 which is indenting the right side of the thecal sac.?
The Consultant states that the minute trace of sFLC in my urine is a good sign, which it is, as regards indicating that my kidneys are functioning, which is confirmed by my eGFR.
However, the relevant figures are the sFLLC results and ratio, which they have only managed to obtain once. If there is one figure relevant o me at my next appointment it is that figure and, though well out of range, it is not unknown for them to be in the thousands. EGFR, ratio and sFLC are the three results I will want to know.
I did note that a senior UK nephrologist stated that when a sFLC reading reaches 500 or more, then a kidney preservation strategy should be started, as it poses a particular threat to the functioning of the kidney.
My problem is that I have unexplained symptoms, and ones that don't easily fit within a diagnosis of MM, though I am still officially MGUS. I have been tested for amyloidosis and that was negative.
At least I know where I am, I think.
One peculiar thing is that a blood differential was included which showed the following.
Neutrophil Count 29.0%
Lymphoplasmacytoid cells 0.0%
Lymphocyte Count 13.0%
Metamelocyte 5.0%
Monocyte Count 0.0%
Myelocyte 15.0%
Eosinophil Count 0.0%
Promyelocyte 4.0%
Basophil Count 0.0%
Blast 0.0%
Plasma Cells Count 3.0%
Nucleated Red Blood Cells 30.00%
The figure that is out of place is that for nucleated red blood cells, which must be a mistake as I have read that apart from new born babies, only those in intensive care would expect to have ANY NBC's apart from reptiles, amphibians and dinosaurs (and camels and alpacas for some strange reason).
Perhaps it's from my bone marrow. I'll enquire.
Pilgrim 11 years, 9 months ago.