I know nothing but I suspect that relatively small changes aren't greatly significant, though it's best to have a small move down than up. At least it's in the right direction.

I've read a lot but when it gets down to a genetic and molecular level, it's probably doing me more harm than the illness. They say that blood is the most complex organ…[Read more]

My predominant symptom is my abdomen and awful digestion which isn't suggestive of myeloma I admit.

The only possible link is if I have amyloidosis though I'm not sure that my results are suggestive of that.

For a long time I have eaten one food item daily for six days a week because I know it makes me ill. It isn't a psychological problem,…[Read more]

Welcome Benz

It does appear that a lot of people here have never had any forewarning before something dramatic has happened but Plasma Cell Dyscrasias or Monoclonal Gammopathies (I'm no expert) can be very varied in their symptoms and effects.

I'm different (and flippant) and have a multitude of symptoms, but nothing critical, which sort of…[Read more]

mike59

Take no risks. I felt a bit of a fraud myself when it was first suggested that I might have 'bone cancer'. My GP is usually very cautious and that made the suggestion all the more surprising.

At the very least you are at increased risk of bone damage and back pain is not something to risk. I am officially only MGUS but I spent a week…[Read more]

Yes I had a bone marrow biopsy and that didn't show anything alarming.

The CT survey they did appeared to evidence that I have led an adventurous and active life, but presumably they don't consider any of the damage they noted is down to MM, but I'll go over it again as some of the things they mention are a concern to me.

I mowed a small…[Read more]

I know the frustration and anxiety and I have been under investigation since the start of the year though my symptoms began years ago.

Officially I am defined as MGUS which doesn't seem to fit with my symptoms, but myeloma is such a wide ranging illness it's wise to take nothing for granted or become too anxious before anything certain is…[Read more]

I probably fall in to the weird category.

I am officially classified as MGUS. My paraproteins aren't high at all, and it's my sFLC's which stand out and, though well above limits and increasing, I've read about people having readings as high as 8,000.

My symptoms have never been classic, but there are so many variations to this illness that…[Read more]

If my illness is MGUS then there must be something else wrong with me as MGUS is supposedly asymptomatic and I have more symptoms than I would like.

My GP claims to only have scant details of my appointment in February, which is why I've applied for my medical records.

Last night I got up in the middle of the night and I had a dreadful case…[Read more]

A diagnosis of MGUS on its own means nothing and doesn't account for the physical symptoms I have been experiencing which are worsening.

Haematology haven't enquired about them and I haven't advised them because the diagnosis doesn't warrant it.

Even discounting my kidney cancer experience I am happy to be easy going and polite, but expect…[Read more]

My balance isn't too good, though ironically the faster I walk the better I feel, but other people on the pavement need to watch out. For that reason I carry a walking stick, though I don't need it to walk. It acts as a warning sign that I don't steer very well.

My right leg appears to have a mind of its own at times, rather like a defective…[Read more]

I am beginning to understand things better.

MGUS is a 'watch and wait' holding diagnosis.

Detection of the Bence Jones protein, which is a tumour marker, elevates the risk, though it doesn't quantify it.

Though I only have scant details, areas of bone lucency have been detected in my hip that have been taken to be bone cysts based on a…[Read more]

Any diagnosis, and my view of it, has to be considered against the fact that I have had a radical nephrectomy due to kidney cancer and, the diagnosis for that was withheld from me and I eventually had to contact my MP to receive treatment. It was an inexplicable situation.

Withholding information from me is therefore not something I appreciate…[Read more]

I'm exceedingly disappointed with my GP, more especially because of my experience with kidney cancer.I won't go over that but you'd be shocked to hear what happened to me and it involved me not being told what was wrong with me. Going over that again won't help.

I must admit that it's a lot to assume from two innocuous sounding words 'Bence…[Read more]

I am grateful for your comments, and I'm fine with bad news, after all I've had kidney cancer, but that was very badly handled and It's unnerving to discover something by accident which has been held back from me.

When my GP first mentioned 'bone cancer', which was the term she used, I discounted it because I didn't have any significant bone…[Read more]

Thanks very much for your reply Dai.

Unfortunately I'm going to get more support from this forum than my GP.

There is something very amiss with me, but without acute symptoms of a bone nature and being advised that I had MGUS then MM didn't appear to be the problem.

[quote]MGUS: A Common But Typically Harmless Blood…[Read more]

It's a blessing that my GP has stuck with me through all this as I'm not sure that many others would and when I saw her this morning I made sure to thank her for all she'd done,

Thankfully I have confidence in the Haematology Department at the local hospital and they should be able to confirm or rule out polymyotosis from simple blood tests.…[Read more]

Oops – I meant polymyositis.