I wonder how many folk have had a similar experience to mine?
A new GP I had not seen before arranged for a blood test, almost a year ago, as I was on and off antibiotics due to repeated chest infections and had lots of odd aches and pains as well as numbness in hands a feet which the neurologist could not find a reason for.
I got the results in January of this year from my usual GP and was told it was Monoclonal gammopathy of unknown significance (MGUS) and that I’d be monitored every 3 months, she was quite blasé about it and said she’d referred me to Haematology but they’d told her it was benign so there was no need for them to see me unless something changed.
So I had my next bloods in March and researched it all and the next time I saw her for my results I asked her could I please find out what type I had and shared with her that I’d found out that a maternal Aunt had passed from Multiple Myeloma.
My GP said there was no need to know what type it is, that my Aunt having Myeloma didn’t necessarily mean anything and that Monoclonal gammopathy of unknown significance (MGUS) is asymptomatic so all of my other issues were unrelated: she also changed me from 3 monthly monitoring to 6 monthly as she felt it was unnecessary to do the bloods every 3 months.
I came away feeling dismissed and frustrated.
I’ve just had my latest blood tests after 6 months and have had a text from her telling me that my levels are elevated beyond the threshold now so she’s referred me to Haematology.
I’m sorry to learn about your circumstance, and can understand the frustration you’ve experienced to some degree, as I have a condition called Chronic lymphocytic leukaemia (CLL) that I was diagnosed with in late April this year and I to have experienced some frustrations during the diagnosis process and subsequent monitoring process that follows.
Your post is very specific to your condition and I have copied in our @BloodCancerUK_Nurses who will be able to understand your condition much better than I and will be able to address some of the more medical questions you may have. Also, don’t forget you can speak confidentially with our support services team for information and support on: 0808 2080 888.
Needless to say, I’m confident you will find our forum a great source of information and support so please do feel free to post any updates you have and / or reach out for support when you feel you need it.
Sorry saw your other post and replied on that. That’s terrible! I’m sorry to hear you’ve been treated like this, it seems to me it’s so misunderstood by many gps and they have tunnel vision. Do you not have the nhs app so you can see your results yourself? Did she say when you may get your appmt with haematology? I hope it’s soon for you. I really don’t think they understand the psychological effect this can have on patients
Thank you for reaching out on the forum.
I am sorry to read the experience you have had so far from the GP, its understandable that you feel dismissed and frustrated.
Being referred to the Haematologist is absolutely the right thing to happen, and I hope with this you will get much more information about your Monoclonal gammopathy of unknown significance (MGUS) and how it is behaving currently.
You were absolutely right to ask what type you have and I am sure the haematologist will go through this with you in much more detail.
We do not know what causes Monoclonal gammopathy of unknown significance (MGUS), however we do know it is thought to be more common in people who have a relative with Monoclonal gammopathy of unknown significance (MGUS), myeloma or another blood cancer. It would be good to tell your Haematologist about your family history. I have attached here all of our information about - MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK where you can read about things in much more detail.
We would be very happy to talk things through with you and our number is 0808 2080 888.
Do keep us updated on how you get on.
Best wishes,
Heidi J (Support Services Nurse)