Sorry for the long post, but I am confused (if I am overthinking this) and need an opinion.
I have RA, Crohn’s, Hashimoto, and psoriasis and I have had these autoimmune disorders for many years now (35 years for RA). Until September/October of last year, I was handling it fine. I had symptoms like fatigue, pain, eating restrictions etc etc due to these disorders but was still functioning fine as I think I have lived most of my life with these symptoms and have developed coping strategies. Due to biologics, I had lab work every 2-3 months and we were noticing that I was getting anemic but rheumatologist and gastroenterologist were not that concerned about it. I kept on telling them that I feel more exhausted than ever along with feeling feverish, night sweats and pain and restless in my legs, but to no avail. Then in November I started feeling confused, brain fog (more than “normal” I felt due to autoimmune) so I took an apmt with my rheumatologist and had to ask him to take me seriously as I was getting concerned. He ran some labs and that’s when they found m spike of 1.1 and referred me to hema/onco who saw me in February and was in room with me for less than 10 mins, diagnosed me with MGUS and told me to get some more labs done. These labs showed low iron levels, along with flc ratio of 1.89 and m spike of 1.2 with IGG kappa band found. He called me with these results and told me I need an iron infusion and he will see me again in 2 months (instead of 6 months) and rerun the labs. Meanwhile I told him that pain in my legs have now become tingling and numbness in my lower legs and it’s bothering me a lot and I can hardly function in my daily life due to my extreme fatigue. My family and friends have noticed the change in me and have been telling me I look sicker than ever. I was 13 when I was diagnosed with RA and I am 47 now so I know this is not same as to what I felt with RA. I have lived all my life with it so I know it’s not the same pain I feel in my body. Anyways Hema/onco told me to get the infusion done and then rerun the labs in first week of April. Today I received the orders and I see that it’s only for CBC and iron, nothing to check my FLC, light chains etc. I understand that my numbers were low and maybe that’s why he did not see the need to rerun these again in 2 months. Still, my concern is that some of my symptoms are getting ignored and with autoimmune disorders that could give these symptoms as well it will always be hard for me or any doc to distinguish if it’s autoimmune or progression of MGUS to SMM. RA increases the risk of progression and so does the medicines I am taking for autoimmune disorders. How do I address this concern?
Thanks in advance.