[pavvygParticipant]

Hi guys,

a long story short a routine blood test showed elevated calcium and protein further blood test showed that I have a paraprotein and likely MGUS or Multiple Myloma.

I’ve been referred to a hemotaligist and I’m worried sick!

I’m 36 year old male normally fit and healthy but recently diagnosed with Gout which is the reason I was having blood test!  Have few back pains in past but nothing major..

Any advice on early symptoms , tests etc  whether having a paraprotein detected is bad bad news!

Thanks in advance

Pav

[jmsmythParticipant]

Hi Pav

Don’t know if I will be of any help. Myeloma is a very I dividuL disease. My husband, like yourself, a routine blood blood test and something showed up and doctor sent him to haematologist. They did a bone marrow test and told him that it showed myeloma but he was smouldering. That was in 2006 and up until 2013 he was still not showing symptons. They gVe him Zometa every month to strengthen his bones. Proteins started to rise and in January 2013 and he had a stem cell transport in March 2013 and has been in remission since.

If you are on face book there is a Myeloma support group you can ask to join and there is a mine of information.
Make a list of questions to ask the consultant and if possible take someone in with you as it is difficult to remember all that is said

Hope all goes well

Regards Jean

[tobygoParticipant]

Hi Paz

Sorry to hear that you might have one of these conditions.

I would say don’t read too much negative into things. There is a wide spectrum of conditions in the MGUS; Smouldering Myeloma; Multiple Myeloma cycle. I hope that you are at the MGUS end and that you remain there for a long time. From MGUS you have a 1% per year chance of developing into Myeloma and so you can sit at MGUS for decades. As far as I am aware, MGUS causes no issues for you (other than perhaps needing to drink lots of water?).

I was diagnosed with MGUS back about 18months ago but the investigation kicked off after a routine blood test 3 years before that. It took a long time to get the diagnosis! I am now 44 with the initial test being made when I was 40.

Wait until you get the full results before jumping to any conclusions.

Toby

[geebeeParticipant]

Pavvy, very much like myself. I found out I had an ‘abnormal protein’ (as my GP called it) after I booked in for one of those MOTs that they seem to offer patients ofa certain age these days ( in my case 45) Totally out of the blue and unexpected.

there followed an appointment at the local cancer unit which totally floored me. Lots of tests later I finally saw a consultant (I’d only saw a registrar until then) and Boom…..I’m sorry to say you have myeloma. I had so hoped for a MGUS diagnosis. I hope that you do indeed have MGUS as its the preferable diagnosis with our findings.

good luck Pavvy x

[andrewrParticipant]

Pavvy,

I was diagnosed with MM via a similar route when I was 47. The term smouldering MM wasn’t even used then because it was back in 1997. I’ve since, through the watching and bloodtest process, had two autologous transplants (the last in October 15).

As somebody else said MM is individual and it’s better being watched so that early treatment can be used (which is more effective) but more importantly you’ve got time and time is when new drugs get developed. Thalidomide and Velcade were not even around when I was 1st diagnosed. I had interferon which isn’t even spoken about. Keep to the regular blood tests, go to Myeloma UK Infodays to keep up with developments and perhaps do some of the things in life that you might otherwise have delayed.

Remember even though you’ve been diagnosed with MM you’re at the lucky end of the MM spectrum.

 

 

 

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