MGUS Symptoms: What symptoms did you experience?

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.

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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.

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Welcome @kaurashima, I moved your post to this related discussion:
- MGUS Symptoms: What symptoms did you experience?
https://connect.mayoclinic.org/discussion/symptoms-etc-of-mgus/

I did this so you can read previous posts and connect easily with other MGUS members like @pmm @scnana @allstaedt57 @mariannalena and many others. I'd also like to tag @lfevold @juniperjgin @gingerw @gingerw @annapocono @cherylmcg who have experience with MGUS and autoimmune conditions.

@kaurashima, I think you are asking the right questions and should pursue them with both you hematologist and rhematologist. Questions like:
- How do you distinguish which symptoms are related to MGUS vs an autoimmune disorder?
- What steps need to be considered to ensure that treatment for RA doesn't accelerate progression of MGUS?
- What do I need to monitor?
- What do I need to know and didn't think to ask?

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@kaurashima
Welcome to Connect. Although we share a blood disorder diagnosis with MGUS, we are all so different in how it presents as symptoms. And those of us with comorbidities…well that just complicates things further.
Colleen kindly provided several members who likely have great wisdom to share. In addition, I’d encourage you to organize your thoughts into questions to ask your hematologist/oncologist. You need not wait for two months, try to schedule a phone call. Worst case scenario, you can give your question to the nurse who will ask your physician and then get back to you with answers. You may need to repeat this with other specialists. Regardless, you will get some of your questions answered.
Have you had luck talking to your doctors about your concerns in the past?

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Thank you, Patty. Up until now, I have had good luck in getting answers to my concerns from Rheumatology. Coincidently, after MGUS diagnosis, I felt as if he was shrugging his shoulders and not paying too much attention to my concerns. I was wondering if it was because he did not know much about MGUS. I came to know this week that he is leaving the practice and now I know why I felt what I felt. It's time to look for another rheumatologist. Meanwhile, I have met Hematologist only once and I did not get my concerns addressed. I plan to do what you mentioned and see if I get answers.

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I am 45 years old, and I was diagnosed with MGUS September of last year. At that time, I was also diagnosed with Carcinoid Cancer and Mono, they found both MGUS and the Cancer while trying to find out why I was so ill for many months. I now have had the Cancer removed and it has not spread, so as of now we only monitor me every year for Carcinoid Cancer. I am still suffering from extreme fatigue, night sweats, light sensitivity, eye pain, eye redness, low grade fevers and general feeling of unwell, achy. I am told by others I look like I am sick.
I was told by my hematologist that MGUS doesn't cause symptoms most of the time, but I can't help but think that this is making me feel sick. Anyone else have any of these symptoms? I feel like I'm crazy at this point.

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I am 45 years old, and I was diagnosed with MGUS September of last year. At that time, I was also diagnosed with Carcinoid Cancer and Mono, they found both MGUS and the Cancer while trying to find out why I was so ill for many months. I now have had the Cancer removed and it has not spread, so as of now we only monitor me every year for Carcinoid Cancer. I am still suffering from extreme fatigue, night sweats, light sensitivity, eye pain, eye redness, low grade fevers and general feeling of unwell, achy. I am told by others I look like I am sick.
I was told by my hematologist that MGUS doesn't cause symptoms most of the time, but I can't help but think that this is making me feel sick. Anyone else have any of these symptoms? I feel like I'm crazy at this point.

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