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MGUS

Amk9
Posted by

Hi 

I am a 45 year old woman.

I was diagnosed with high risk MGUS a little over a year ago. Apparently it is rare for someone of my age, gender and ethnicity to develop this and information about this condition is limited.

I know that unlike many on here I do not have cancer but this is a precancerous condition and feel that I want information and support if it were to develop into myloma which is what my consultant has said could happen. 

I have begun to develop some symptom such as tingling in my hands and dizziness . Always suffered with bone pain which was reason for referal to a rheumatologist who referred me to haematology.

I am mostly well although do suffer with a lot of infections particularly chest. 

I had bone marrow biopsy last year that lead to my diagnosis but am currently not receiving treatment.  I attend haematology for full blood tests every 3 months. 

I'm hoping to be able to read others experiences to gain knowledge about this and other related conditions. 

Thanks for listening any advice gratefully received.  

src60
Posted by

Hi , welcome to the community though sorry you have this worry, MGUS is not something I had heard of before but I see we do have some information about it here

I have ankylosing spondylitis so am very familiar with rheumatologists and physiotherapists and all the wonders of bone pian.

It does sound like the doctors are keeping a very close eye on you, on the one hand that can be very reassuring but on the other can cause problems all of its own especially when people have to travel some way to see the haematology team. My wife's cancer is currently stable and her team are now content to only monitor every 9 months though they will always arrange an appointment if she wants.

Do remember to mention anything that concerns you when you see the doctors, they might be a sign of something but of course they could also be something totally unrelated but that someone else could help you with and that would make you more comfortable - trouble is we often present with overlapping issues.

<<hugs>>

Steve

The BODACH
Posted by

Hi and welcome to the Mac family and whilst I am sorry to see you here I'm glad that you've reached out to us.

You might find it of interest to join our Myeloma Group and introduce yourself to the members.

The following might be of interest to you Macmillan LINK or this This Link on watch and wait.

Not knowing what lies ahead must be very worrying for you but I am sure that your GP and others will be keeping a close eye on you in the future.

You are very welcome to come on here at anytime and speak to the members who don't mind if it's because you need an outlet to let off steam or have a good old moan we can't promise to put the world to rights but we are very good listeners and full of help, advice and support anytime you need some.

Ian

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greg777
Posted by

Hi Amk9,

Another warm welcome from me. As Bodach has written, you are very welcome to join us in the myeloma part of the forum.

As I understand it, everyone who has myeloma has had MGUS, but everyone who has MGUS does not go on to develop myeloma. I didn’t know I had MGUS but I am guessing I must have had it at some point. I am really hoping that you don’t go on to develop myeloma. I was 36 when diagnosed so I understand the shock of being diagnosed at a relatively young age. 

If you do go on to develop myeloma, there are increasing reasons for optimism with treatments developing all the time. Consultants are even beginning to think of myeloma as a chronic condition rather than the killer disease it was maybe 20-30 years ago.

Anyway, I am rambling, just wanted to say hello and please join us over in the myeloma part of the forum as you may find some members who can talk more specifically about MGUS.

All the best

Greg

james1130
Posted by

Hi, I am a 58 female just diagnosed with MGUS. I went to my Hematologist this week for a Cat scan and more urine testing.

My lab work is crazy IGM 640  normal under 200 serum lambda 35.5 normal is under 26. my kidney function GFR is 49 normal is under 60, and Mspike is .38.

My symptom is back pain, blurred vision, kidney disease, and lethargic.My Dr. says if I have MGUS and it has not progressed that all they do for this condition is test you twice year to be sure it does not progress.

I am very worried. I wonder anyone out there with same issues.

Thanks for listening to my woes.