I’ve mentioned it before yvonnese, but you are legally entitled to know your medical results. There is no arguing with that and, purely because I had a terrible experience of having information withheld from me when I had kidney cancer, I am not prepared to be fobbed off. I’d just ask the haematologist at the start of each appointment and have y…[Read more]

yvonnese – you have the right to know the result of any medical test performed on you and it is also NHS and Department of Health policy, and also government policy too.

I have had problems in this area, and my problems have been with LRI Tony, and it is only recently that they have begun sending me a copy of the letter to my GP informing me of…[Read more]

They announced that they were running 1 hour 40 minutes late when I got to the hospital and some people were grumbling but that achieves nothing so I went into a ‘Zen’ state and turned on my i-Pod. Going in to see a Consultant with a grumpy attitude isn’t going to help me get from him/her what I want to know.

As it turned out I was seen by a very…[Read more]

They announced that they were running 1 hour 40 minutes late when I got to the hospital and some people were grumbling but that achieves nothing so I went into a ‘Zen’ state and turned on my i-Pod. Going in to see a Consultant with a grumpy attitude isn’t going to help me get from him/her what I want to know.

As it turned out I was seen by a very…[Read more]

They announced that they were running 1 hour 40 minutes late when I got to the hospital and some people were grumbling but that achieves nothing so I went into a ‘Zen’ state and turned on my i-Pod. Going in to see a Consultant with a grumpy attitude isn’t going to help me get from him/her what I want to know.

As it turned out I was seen by a very…[Read more]

Don’t forget your eGFR ‘angelinaevangelou’. Mine’s 60 though today I was given an updated figure of 65. That’s not particularly good, but with one kidney, it’s quite acceptable and no reason for me to worry. Like most of these readings, unless they start off particularly poor then the significance is if they show a constant trend in the wrong…[Read more]

My GP has previously recommended that I take Vitamin D and B12 supplements which I do. I have wondered whether or not it’s one of those general recommendations though I certainly recall that I have been told specifically that I have a deficiency in Vitamin D. I am currently at the MGUS stage with my last pp’s at 9.

One thing Rosie 1961 and be assured that I speak with no qualification or expertise, but from my own research the 24 hour urine test is not the method usually used to detect myeloma. If they use that method it is a 24 hour urine test and must include one sample first thing after waking up (which it would be if it is properly 24 hours of course).…[Read more]

It’s my turn to get blood results next week. Last time they had gone up from 5 to 9 so these results should be significant. It’s a bit like waiting for exam results only you don’t have any control over what they may be. Another jump of 4 and I suspect I’d probably get checked at shorter intervals.

I don’t have any symptoms as regards my bones…[Read more]

A diagnosis of MGUS is rather like a ‘sword of Damocles’ hanging above your head and it’s impossible to ignore it, especially in the early weeks/months after diagnosis. The diagnosis does make a difference to you and any medical decision or treatment you receive and it always has to be borne in mind when you have unexpected symptoms but, you have…[Read more]

Whenever bloods are done for my MGUS it includes a figure for eGFR with is essentially a percentage figure for the efficiency of your kidneys. It is only an estimate and I believe that it can vary more than most figures, but it’s a good general guide as to how the kidneys are working.

I lost a kidney to kidney cancer and my result is usually…[Read more]

My own very simple view is that the human body is so complex and produces cells by the billion every day and there will always be some defective ones. In the normal course of events this doesn’t matter. No one’s body is perfect and at small levels they will be excreted or not cause any problem. If this blood test were performed on everyone I…[Read more]

MGUS is probably a lot more widespread than is recognised simply because there isn’t any general screening for it. Of course if you have MGUS it’s far better to have it monitored than only realise you have it when there is a medical crisis, as it’s very difficult to treat you after myeloma has done damage to your bones or organs, and there are…[Read more]

I have my bloods taken every 4 months and only see a Consultant once a year and, as long as there appears to be no significant rise in my results, that’s fine by me. They normally only see you more frequently if your results appear to require it and, from other posts, I think our results are quite similar, though other factors will be taken into…[Read more]

Hi fozz

We appear to have similar readings. In December 2014 my PP was 8.5, my kappa/lambda ratio was 0.03,  and serum free lambda light chain 159.2 and I’m still diagnosed at the MGUS stage.

I have read elsewhere that even though a SFLC level may be outside the normal range, it isn’t considered medically significant until it passes 100. Having…[Read more]

Hi Angelina

My own stats are most recently Paraproteins 8.5 and Serum Free Lambda Light Chain 159.2  Another figure of relevance is the kappa/lambda ratio which in my case is 0.03. I am recorded as MGUS intermediate risk.

My understanding is that diagnosis isn’t simply a case of your results being out of range so you must have the illness.…[Read more]

Just a follow up to my last post. My GP rang up the Fracture Clinic at LRI to get me seen by them, Presumably they said no and from her reaction they put the phone down on her. Her request was natural and sensible if not obligatory for someone with my background – cancer and MGUS.

Lo and behold on the following day I was telephoned at home and…[Read more]

Welcome abroad fozz. I’m afraid that specifics aren’t how it works with myeloma and associated conditions. It’s best to think that you’re at the start of a journey and the medics will detect any obstacles that may come your way and see whether or not your reading is having any effect on any other part of your body.

Above everything else it seems…[Read more]

Welcome abroad fozz. I’m afraid that specifics aren’t how it works with myeloma and associated conditions. It’s best to think that you’re at the start of a journey and the medics will detect any obstacles that may come your way and see that whether or not your reading is having any effect on any other part of your body.

Above everything else it…[Read more]

I forgot to mention Jeff that I had kidney cancer 7 years ago and lost one kidney to it, so my risk factors are high. I’m on 8 x 50mg Tramadol a day aside from a host of other tablets but the only difference it makes is perhaps to slightly increase my range of movement and reduce the background ache enabling me to sleep.

Hopefully the x-ray…[Read more]