Hi everyone I’m Newley diagnosed Monoclonal gammopathy of unknown significance (MGUS) IgM kappa on 3 mthly bloods just under gp care no haematology input. I was quite unwell with anemia back pain etc when they found Monoclonal gammopathy of unknown significance (MGUS) my ct scan showed no lesions but I had a lot of enlarged lymph nodes and spleen. I was told it was probably just reactive so nothing further done. Since then I’ve developed neuropathy and finally have a neurology appointment in two weeks time. I’m still anemic and just always so so tired exhausted all the time I’ve have odd symptoms I can’t tolerate coffee or sugar in drinks now,how odds that is it related? Everything else tastes normal, coffee makes me feel sick and sugar tastes like saccharine. I wonder if anyone else is affected like this. Also random bone pain in my arms wrist or legs is this all normal, Gps don’t seem interested?
Hi @Mimi2 a great big welcome to our forum and I hope others will share their experiences for you.
The Blood Cancer UK website has lots of information on it about fatigue, money and work, active monitoring etc if and when you might need it.
You so clearly show what complex beings we are and that the symptoms you describe could be attributed to a number of conditions or nothing at all.
Somethings that help me are to make a list of my symptoms and their severity, my fears, questions and practicalities and I have learnt to be pleasantly assertive and ask everything I want to. I then do not leave the consulting room till I am satisfied.
Some people ask for referrals or 2nd opinions.
The Blood Cancer UK support line is also available on 0808 2080 888
Look after, pace yourself and be very kind to yourself and please do let us know how you get on.