Having turned up today at my chemist for the third time to collect the remnants of my prescription I thought I was going to be let down again judging by all the searching they were doing. I was feeling very unwell, and not a little soggy, so I terminated our relationship without further ado.

Chemists trumpet this new Electronic Prescription…[Read more]

I like to think that I’m fortunate that the condition is being monitored, particularly when I read posts like the recent one by a person who only discovered the illness when they suffered critical spinal and kidney damage. I’m sure that there are many people with MGUS who don’t know it and are at risk of a very nasty shock.

A good result that puts my mind at rest. My GP rang me to confirm that I have been put on the CKD register and she asked if I wanted anything else done, to which I replied ‘No’. It may seem that my request was pointless but I have another eGFR coming up and I want to know that result first, when I’ll also be informed whether or not my PP’s/FLC’s…[Read more]

Having a quiet ‘rant’ is good for you and I know how you feel.

In Leicester they devised a wonderfully bizarre system for notifying patients of results that didn’t work, created confusion and didn’t actually inform me of results. They termed the phone calls ‘appointments’ so that when i received a text message confirmation of an ‘appointment’,…[Read more]

For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was…[Read more]

After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.

I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results  have been increasing but a…[Read more]

After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.

I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results  have been increasing but a…[Read more]

Hi mark86

Trying to comprehend myeloma and the significance of test results is a baffling issue but, if you spend enough time on it, you can make sense of it all.

However, first of all self-diagnosis is not a good thing as it limits or directs your GP to make one specific investigation, when it could actually be something completely different.…[Read more]

Hi mark86

Trying to comprehend myeloma and the significance of test results is a baffling issue but, if you spend enough time on it, you can make sense of it all.

However, first of all self-diagnosis is not a good thing as it limits or directs your GP to make one specific investigation, when it could actually be something completely different.…[Read more]

Hello yvonnese.

I am inclined to agree with you and though I am in a low risk category even as regards MGUS (at present) I have always considered my immune system to be wayward. The major problem is not so much that it is less effective but that it is liable to over react when dealing with an illness/infection. Some years back I had a flu jab…[Read more]

I cannot answer your question directly tm1960, but I find the best way to monitor my condition, which is at the MGUS stage, is to monitor my blood test results. With MGUS I am currently at low risk and I would not expect there to be any significant symptoms. I always look at paraproteins, free light chains, eGFR and kappa/lambda ratio and they…[Read more]

I had mine at Leicester Royal Infirmary Tony Farquharson and I only had gas and wasn’t offered anything else, but it wasn’t a problem for me. I can understand anyone being nervous about it and it would be arrogant for me to consider that my experience is what everyone else should experience. If you already have problems/pain in the area then…[Read more]

My own understanding, ackibyfobia, is that the Bence Jones urine test is only relevant in the case of suspected amyloidosis, otherwise the blood test is the gold standard for myeloma investigations for a number of reasons. Having said that I’ve had two 24 hour Bence Jones urine tests and I never did find out what happened to the second one, but I…[Read more]

I can understand why a Consultant/Doctor may wish to avoid providing results, particularly if he/she feels the patient will misconstrue their significance. After all, for most people it will be like a bolt from the blue, and to find that no treatment follows immediately after abnormal results can be hard to understand. It takes quite a bit of…[Read more]

I ask for Paraproteins, the Free Light Chain figure  (whichever one is relevant to you), kappa/lambda ratio and eGFR.  If you have a bad k/l ratio (as I d0) then I suspect it will always be bad. Your eGFR tells you your kidney function. Mine isn’t good but I have only one kidney, so actually my figure is quite good at 60. With all these figures t…[Read more]

Personally I didn’t feel any pain at all, just a strange numb tingling sensation but I have no doubt that it can affect different people in different ways.