[buskerscatParticipant]

Hello I found this forum today as I have just received results of blood tests following high levels of immunoglobulin in the last lot of tests. Dr told me I have MGUS. Having since googled it, apparently it’s symptomless…

But my original symptoms that Ive had for 6 months and went to Drs for originally still haven’t been explained including bad back/abdo pains 24hrs a day, upset stomach, pins and needles and glands up and down all the time. Dr prescribed me with pain killers and suggested anti depressants, I’m just a little surprised that that’s it as far as he is concerned – I have been advised to have a follow up blood test in 3 months.

I just wondered if anyone else has experienced this kind of treatment? I guess I’m just getting my head round the diagnosis, the fact it’s symptomless and the fact that my other symptoms now won’t be investigated as it’s ‘nothing serious’. Thank you for taking the time to read this.

[iangParticipant]

There is an informative Myeloma UK Infosheet about MGUS:

Monoclonal Gammopathy of Undetermined Significance (MGUS) Infosheet

Or

https://www.myeloma.org.uk/wp-content/uploads/2014/05/Myeloma-UK-MGUS-Infosheet.pdf

(I’ve given 2 links in case one of them changes.)

The diagnosis of MGUS is described on pages 2 and 3. As it says, MGUS is usually discovered when blood tests are carried out for another reason. It will need monitoring in case it develops into myeloma, but this only happens to a relatively small proportion of MGUS patients.

Good luck, Ian

[cygnetParticipant]

Hi Buskerscat

I’m sorry to hear about your diagnosis and also your on going symptoms.

Although the medical definition of MGUS says it’s symptomless, lots of people who suffer from it do experience symptoms so please don’t think you are alone. In fact I recognise some of the ones you describe myself!

The leaflet Ian mentions is very informative but if you have a look at the American Myeloma Beacon website you will discover lots of people reporting on-going symptoms along side MGUS/Smoldering Myeloma.

I hope this helps

Good luck Cx

[buskerscatParticipant]

Thank you very much for replies. It’s just left me a little bit confused, I suppose, that I have been diagnosed with something ‘symptomless’ and then sent on my way without actually Dr looking at what I went there for originally. I feel like this has sort of side tracked treatment or diagnosis for other things, i.e. Abdo/back pain for 6 months doesn’t seem really right to me and I wonder if they would have investigated further if it wasn’t for this MGUS?

I guess I just wonder if this is common treatment of patients with MGUS in the UK?

I have been looking at the myeloma beacon website, thank you 🙂

[iangParticipant]

I guess the question is do you have two unrelated conditions, i.e. MGUS and something else that’s causing your symptoms, or just MGUS. Presumably your GP is assuming initially that you have two conditions, and he is giving you pain killers to treat the pain. Antidepressants can be used to treat chronic pain by the way, they don’t necessarily indicate he thinks you’re depressed. Did your GP tell you to come back if there’s no improvement? The standard management of patients with MGUS is that they are monitored, and that will be what the follow up blood test is for.

I was never diagnosed with MGUS so I don’t have the first hand experience that Cygnet has.
> Cygnet. Were you referred to a hospital consultant about your MGUS, or is it/was it managed by your GP?

Best wishes to both of you, Ian

[buskerscatParticipant]

Thanks for responding Ian, yes I guess that’s my question really and I’d be interested to know other’s experiences as I assume most people have discovered they have this following tests for other things.

I have been told to make an appointment in 3 months. I just think I’d be more reassured if I had been referred to a specialist but perhaps my results were just too low?

[cygnetParticipant]

Hi again 🙂

Do you know what your paraprotein  (pp) level was in these tests? If it is low as you said your Gp may have decided to retest and then refer you onto haematology or he may have spoken to them already.

Either way if you’re unhappy/bewildered/ still feeling unwell I would suggest you go back and clarify what is going on at your surgery.

Where I live everyone is referred onto haematology and then if the  pp level is low ( below 15) with no other symptoms patients are managed by the Gp. If higher, management is via the hospital clinic. I didn’t stay as MGUS as my bone marrow biopsy moved me into smoldering.

Don’t be afraid to ask questions – you have to be your own advocate.

Good luck,

Cx

 

 

 

[buskerscatParticipant]

Hi Cygnet, thanks for your response. I am guessing it was low as the second test was ok. I hadn’t heard of MGUS so I didn’t really know what questions to ask – when I read it was symptomless it has left me with more questions!  The problem was, that when I said that I still have these symptoms, the doctor said that all my blood tests were fine (except the immunoglobulin) and the ultrasound was perfect so really I should just be pleased it’s nothing serious!

Were you referred for a biopsy as a result of your levels or is it standard that everyone in your area gets the biopsy?  Would you mind me asking what symptoms took you to the Drs in the first place to get this diagnosis?

Thanks for the info on pp levels. Maybe I should try to get hold of my blood test results to help understand it all a little bit more.  Think I need to be more assertive 🙂

 

 

[cygnetParticipant]

Hi – just lost first reply ( grrr)

I don’t know the criteria for bone marrow biopsy but my pp level was 27 at referral.

Initially at the end 2012, I was diagnosed with iron deficient anaemia. No one had an explanation for the pains I had then in my legs – I do alot of exercise but it wasn’t muscle pain. My physio/osteopath was baffled too. Throughout 2013 I had recurrent sinus/ear infections. I tried to avoid the doctors but had to  go ahead of flights abroad. In September /October 2013 my Gp referred me urgently to ENT. From there  in early 2014 I went to Neurology ( now I had pain/pins and needles in my hands too) . It was the neurologist who picked up the paraproteins and sent me to the joys of Haematology – just in time for Christmas 2014!!

I hope this helps

Take care and good luck

Cx

[buskerscatParticipant]

Cygnet, thanks so much for taking the time to explain what happened with you.

I went back to a different doctor yesterday with my a copy of my blood tests, she said as the IgM level are so low (3.<span style=”color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;”>37 g/L) it may not even be MGUS and I will have to just wait and have the test again in a few months. I had raised levels in bloods/urine that were kidney and pancreas related but she said they just weren’t high enough to do anything with… So end result was that I’m being referred for ME and have anti depressants for my back.</span>

Thanks again for your help x

 

[rosie1961Participant]

One of the reasons I was tested for MM was because my dad has it and I was getting pins and needles. It turned out my B12 was low and since having B12 injections the pins and needles have gone. There seems to be a link with B12 and MGUS.

I was diagnosed MGUS, my pp levels are very low. But I do still have some strange feelings in my legs at times. There are research articles about neuropathies featuring with MGUS. It seems to me that it is not always symptomless, but that the significance is just not yet understood.

 

 

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