Graham-C

  • I had been singing the praises of Leicester Royal Infirmary and their ‘telephone appointment’ arrangement, I should have foreseen that it would all fall apart.

    I consider myself to be a low risk MGUS patient and I am quite happy not to take up Haematology staff time in attending an appointment. The idea seems perfect for the hospital and enables…[Read more]

  • Hi¬†misswoosie

    As regards paraprotein levels I’d use the analogy of people being measured for radioactivity, and we all have some level of radioactivity in our bodies since it’s in the environment all around us, especially in the rocks on which we live. Those living in areas with granite outcrops will be more radioactive than those living…[Read more]

  • Hi¬†misswoosie

    As regards paraprotein levels I’d use the analogy of people being measured for radioactivity, and we all have some level of radioactivity in our bodies since it’s in the environment all around us, especially in the rocks on which we live. Those living in areas with granite outcrops will be more radioactive than those living…[Read more]

  • I am at five and a half years of being MGUS and I could go another 10 years with no change. There isn’t any way to predict other than by having continuing blood tests. The progression rate is really quite small. Last year I had a small blip that caused some excitement but they took another blood test and it turned out simply to be an isolated blip…[Read more]

  • In simple terms you could say that osteopenia is to osteoporosis what MGUS is to myeloma.

    My mother has osteoporosis which is how I know about the DEXA scan. Perhaps your GP could recommend some simple dietary changes, but always keeping in mind your kidney situation. I take a vitamin D supplement but, in the UK that’s fairly standard and most…[Read more]

  • One quick point DoylerOz.

    Have you considered a DEXA scan ? That measures bone density and seems appropriate considering you have mentioned fractures. Just because your symptoms haven’t led to a diagnosis it doesn’t mean that you are imagining them. Age, sex and other details determine if it’s appropriate for you but no reason you can’t discuss…[Read more]

  • I have been MGUS since January 2012 and the paraproteins have varied between 3.00 and 10.30 in that time. One similarity we share is that I have had kidney problems relating to kidney cancer in 2007 and I now have just the one kidney. One good thing is that the blood tests for MGUS include eGFR which is effectively a reflection of kidney…[Read more]

  • At age 64 I have been diagnosed with MGUS for over 5 years. A diagnosis of MGUS isn’t a death sentence or a reason for undue pessimism. As much as I’d prefer to be without it, I do get regular blood tests taken which would highlight any unusual results. For me it is every four months as I accept that I am at low risk. Perhaps next time it will…[Read more]

  • It would be wrong for me to advise you or make any recommendation or diagnosis but my experience may give some perspective to your situation.

    I am a male of 64 years age and I have been MGUS for over five years and I currently have blood tests every 4 months with a call call to confirm the results to me which I make a note of. I consider that I…[Read more]

  • graham-c replied to the topic MGUS in the forum Newcomers 5 years, 5 months ago

    I’ve been MGUS for 5/6 years and nowadays I get blood tests every 4/6 months with ‘virtual appointments’ which means that I get basic results by phone. I’ve had the odd small spike but overall I know that my results are low level and don’t merit more attention. I am happy with that and am thankful that I have been fortunate. I’m being monitored…[Read more]

  • I wonder if it’s not so much a different method of measuring pp’s but more a different way of interpreting and reacting to changes in results. Just something to consider.

  • Nothing wrong with a little healthy hypochondria.

    I’m no expert but the subtle but important point is that your results are referring, I presume, to healthy immunoglobulins whereas in this condition (MGUS/myeloma) the immunoglobulins being produced are clonal or faulty, and the risk is that their proliferation will harm other organs and people’s…[Read more]

  • Hello Marian.

    It does seem strange that you have paraproteins so high, and increasing, without more intensive investigation. In my case with MGUS and an increased reading of something like 10 they called me in unexpectedly, which caught me unawares. It turned out to be nothing but your results are very high.

    The term ‘asymptomatic’ is…[Read more]

  • Hi Loulou.

    To my untutored mind I would have thought that corneal involvement is unusual and indeed so is the fact that they discovered it at such a young age. The rule is that myeloma can affect any organ except the brain, but even though the normal route of affecting the bone is bad enough, the possibility of it affecting the eyes would concern…[Read more]

  • Many thanks for your reply Debbie.

    I have no problem with the hospital, doctor or the diagnosis of my low level MGUS. I only mentioned it because it was an interesting anomaly and one that will have future implications for me, if only meaning that prognostically they are of no value in my case.

    The more relevant point to me personally, that…[Read more]

  • I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

    DIAGNOSIS

    I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

  • I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

    DIAGNOSIS

    I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

  • I won’t waffle as I am liable to do. I’ll simply present my own situation and an unusual set of results that have me puzzled.

    DIAGNOSIS

    I am MGUS at an unremarkable level and have been for some years, apart from a recent blip that has gone back to normal levels. I am now to be reviewed at six monthly intervals with a phone contact to advise me…[Read more]

  • In my humble opinion the worst possible thing is to remain indoors facing the same four walls day after day. My mother is 93 and severely affected by osteoporosis and for her benefit, and mine too, I take her out once a week to a stately home or similar attraction. She has a collapsible wheelchair, that is necessary for any long walking stints,…[Read more]

  • Just to continue the confusing status of MGUS I’ll just mention that I was asked to call in at the hospital over my results and obviously they were significantly changed. At that time I felt no better or worse than usual. However since then I have endured a horrific cold virus over the past ten days. It’s like being in a tumble dryer with symptoms…[Read more]

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