Hiya,
So I've been round my mum's for three days and as I'm about to retire for the evening she hands me a letter from the doc she saw when she was visiting Cornwall.
It says a recent blood test for her has demonstrated a new serum paraprotein IgG kappa 4g/L with supplementary tests Haemoglobin 117g/L, creatinine 80, corrected calcium 2.15mmol/L.
It then says "Unless the patient has unexplained anaemia, renal impairment, hypercalcamia, bony pain or recurrent bacterial infection, the likelihood is that they have monocional gammopathy of uncertain significance (MGUS) and simply require primary care blood test monitoring. We recommend the following blood tests be performed six monthly on two occasions and if stable annually thereafter - Full blood count, renal function, calcium, immunoglobulins, serum protein electrophoresis. Cornwall MGUS and Myeloma Team advice on primary care management of MGUS can be accessed from the Kernow Clinical Commissioning Group website"
This is dated October 2015 - I said what happened and she said she thought her surgery would've contacted her but they haven't. There are massive problems with her local surgery, you can't even get an appointment with a doctor you have to book a preliminary appointment. It's in the local paper regularly cos it's so awful.
I got her to ask for B12 tests a few weeks back along with Ferritin, Folate, Full Blood Count and TSH - I posted previously with the results, they forgot the Full Blood Count, her B12 was 678, ferritin was about 320, double the range yet a year ago they gave her iron infusions and her TSH came back 4.3, just over the range. They said they're going to check in a month the TSH again but she has to go back on Tuesday for a retake of the creatinine and GFR - my research makes me think they're thinking she has kidney issues. Then she has a call on Thursday with the doctor - not an appointment, she has to wait around for them to call - not even sure the results will be back by then!
My hunch is it's functional B12 deficiency cos, well, having been through it myself and seeing signs since birth and seeing her go through her life of misdiagnosis - from early memories of seeing her in hospital with her eyes covered cos the lights hurt migraines to her parkinsons misdiagnosis, uleratic cholitis - all I reckon from eating gluten and having genes which don't process B12 well. She even said today feeding time for me was fun as a baby as she had to lined the floor first cos I'd throw it all up.
Anyway of course I googled paraprotein and MGUS and B12 and thousands of results came up with potential links, and I searched on here and found one reply from fbirder saying:
"If your slightly raised MCV was due to a B12 deficiency then this would have fixed itself by now if you've been injecting daily for 6 months. All your red cells would have been made in the last 3 months, or so."
To which the reply was they were going to get tests for paraprotein to make sure it wasn't something more sinister like bone marrow cancer. More searching brings up things like chronic myelocytic leukemia.
I'm now worried on two counts, for my mum of course as I don't know how with a high B12 level I'm going to get her doc to understand anything about B12 - was going to get them to do MMA and homocysteine but tempted to just go all in and get her to ask for loading doses and if not then find somewhere to get her injected professionally first, or whether it's that at all (I'm pretty sure it is - I know thyroid symptoms similar but there's much more - anaemia, memory, mood, etc.).
I'm also worried about myself as I've been injecting daily for 7 months now and still have to inject at least twice a day (it's quite stressful here & defo can't last two days even without stress!), and my blood counts don't seem to be moving much even after 300 injections:
The following four results are from 26-Jul-17, 7-Aug-17, 11-Jan-18, 16-Mar-18
White blood count: 6.8[4-10], 7.6, 7, 10.4
MCV 101.9fl[83-101], 103.8, 100.6, 100.2
MCHL 35.3pg[27-32], 36, 34.6, 35.2
MCHC 346g/L[315-345], 246, 344, 351
RBC 4.68[4.5-5.5], 4.45, 4.74, 4.58
Neutrophil count 3.6[2-7], 4.5, 4.7, 7.9
Should I be seeing more change in these levels by now or am I just worrying too much...?
How can I best advise my mum on way forward...?
So many questions, I really appreciate your time and attention, sorry for the long post, didn't know how I could make it shorter & condense all the necessary info!!
I've still got pins & needles in my feet and fingers with numb bits, that's apparently fine the neurologist said but then I see it's also a sign of the bone marrow issues 
MCV & MCH
Depleting levels of b12
Dead-end at haematologist appointment-what next?
