Hi Hoffgrad
Firstly this forum is for anyone who has, or thinks they may have, any of the monoclonal gammopathies, from MGUS through to myeloma to plasma cell leukaemia.
Many of us have had to argue for initial testing, these diseases are not well known by GPs, who will typically only come across one or two cases in their careers, so it’s not uncommon for people to have repeated GP appointments before being referred to haematology. Many of us have had to become quite assertive and have had to be self advocates.
It is possible for MGUS to precede other conditions, including chronic lymphocytic leukaemia (which might tie in with the night sweats which are less characteristic of myeloma) and Waldenstroms Macroglobulinemia which is a type of lymphoma (which would tie in with IgM involvement, which is rare in myeloma).
Any results outside normal limits are by definition “not normal” and should be followed up. However I hope its reassuring that active disease usually involves levels very significantly outside normal levels.
Although it should not be necessary, some people have resorted to having an initial private haematology appointment if they feel they are getting nowhere with their GP. If you need subsequent treatment, patients can slot back into NHS.
