I was recently diagnosed with monoclonal gammopathy of unknown significance (MGUS).
Diagnosed after seeing a rhematogist about pain in my shoulder, feet (neuropathy) & weight loss. She was very thorough. Took 5 vials of blood. I was told i had an M spike & elevated lambda/kappa ratio. She referred me to hematologis/ oncologist. I chose one who was highly rated for medical expertise. However, i didn’t look at very low rating for bedside manner or answeing questions:(
My 2nd visit was to follow-up on blood rests he took. He kept me waiting over an hour & then came in & told me “you may have smoldering mylemoma” - i was in shock, so wasn’t prepared for questions. He told me to come back in 2 months. Meanwhile, ive developed terrible pain in my lower back. I don’t know if this is related or not.
Went to pain management & got shots in my lower back, shoulder & neck w/ temporary relief.
My next blood draw is 1/14. Im anxious, depressed & and frightened.
My M spike isn’t anywhere as high as others ive seen on forum, but very low iga & igm which he didn’t explain.
Anyway, just wanted to share my story.
I would greatly appreciate any feedback/support!
Thank you so much!
Hi @rachelc ,
Welcome to the forum. I know you will get loads of welcomes and wonderful advice from the team of volunteers and nurses here but wanted to say you are not alone in experiencing the shock of a diagnosis and the seemingly lack of compassion in delivering news like that from some doctors. I’m so sorry you have been left ‘hanging’ with a multitude of questions and fear. I’m guessing from your post you are not in the UK? Try not to compare and Google too much as everyone is different and treatment varies so much. The wonderful Erica @Erica (a volunteer on here) will tell you to write all your questions down and to be pleasantly assertive and not leave until you have the answers you need. I have also been on the receiving end of a consultant without compassion and it threw me so completely I didn’t get what I needed. Next time I will say something and/or ask for another doctor. No-one can understand the impact unless they experience what you are feeling now.
As for any physical changes, make sure your doctor/team/etc know what is happening so they can monitor you. I have monoclonal gammopathy of unknown significance (MGUS) and I am on ‘watch and wait’ with blood tests every three months.
Let us know how you go and I know you will get much more information and support here.
Sending a virtual hug
I have been living with myeloma since 2017
Although there is no cure at the moment it’s very treatable
I’m linking you smouldering myeloma download from myeloma uk
I don’t know if your in the uk I will link you a gp guide that may help you write down questions you want to ask and answer some of your questions
Any pain that’s unusual or different I would report it to my team
Consultants vary in my experience not all have nice bedside manners
I would take this time while your waiting for bloods to get familiar with your diagnosis
You will need all your bloods to get the whole picture and each persons myeloma is individual to them
It ok too to not be ok
Hi @rachelc I am so glad that you have found us.
I can hardly follow @AllyBally and @2DB brilliant responses to you.
Perhaps sometimes being a very good medical specialist doesn’t mean they also have an empathetic bedside manner.
Also I think sometimes working with conditions with really scary names all day long means that they do not realise the affect medical terms can have. It is a new world for us that speaks some weird, very scary, language.
When I am in shock I freeze and my mind goes blank.
I was given my diagnosis by a gynaecologist and I can still see it surrounded by zig zags in my mind and that was 20 yrs ago.
I am also under a Rheumatologist and I find my back is worse with stress because I tense up
I will send you a link from the Blood Cancer UK website Blood cancer: mind and emotions | Blood Cancer UK.
I found counselling helped me, it is personal choice, I was in shock for a long while after my diagnosis.
Perhaps don’t get too tied up with numbers and I somehow also focus on the one result that is abnormal and not the several that are normal.
Be kind to yourself and please do keep posting how you are