Yes; it’s perplexing and almost like a weird form of punishment! I’m being facetious here, but sometimes it does feel like that when - as you’ve described - you’re told to report, told it’s related to MGUS progression, then told nothing will happen until (in my case from my haematologist) you have overt CRAB. In the mean time, damage is being done. And there’s also the harm coming from judgement that it’s ‘only’ MGUS, and even with symptoms “you don’t have SMM or MM” so “there’s no need to think you have cancer” is what I’ve been told. Clearly, MGUS isn’t classified as cancer - I’ve been beaten like a drum enough on that point thank you very much, but the other symptoms that aren’t cancer are what cause me much issue, but due to MGUS “not being cancer”, by default the other symptoms are summarily dismissed. In my experience, they are not linearly correlated thus shouldn’t be considered such. But this is the faulty ‘logic’ I’m disappointingly faced with each time I see the haematologist…who demands I return for this little mind-game each 4-6 months. Setting aside being flippant, in my experience it is an otherwise unaware form of harm to MGUS patients directly enacted by medics that incorrectly associate the classification of cancer to the ‘acceptable’ experience of symptoms from plasma cell early dyscrasia; seems to me that some people have either a significant level of impact from monoclonal gammopathy due to its activity on the body, or they have a distinct susceptibility to that activity, or a combination of both factors, and this needs to be recognised, studied, and evaluated to determine if treatment interventions would be warranted to prevent damage due to the ‘non-cancer’ effect on tissues of MG’s.
I think it’s very relevant to discuss these currently peripheral but significant contributors to quality of life and adjunct harm to the body, besides the relationship to cancer, and I think this could also benefit the people with more advanced disease in terms of what I call the ‘collateral damage’ of MG’s in the body.
Just musing 🤔🙂

Just an update, sorry no new clinical findings. It's been a long rough week, and thankfully, it is almost over. I have had dealings with a few snarky office staff, but at the end of the day I feel as if I have some satisfaction with a referral and appointment next week, (amazingly), to a new haemotologist. I had bloodwork to re-check the low platelets/high MPV, and also to confirm what I believe is RA. Blood work at an ER visit did confirm the RA but the nurse said "she" can't refer me until the blood work is back. I tried to tell her, that it was confirmed at the ER, and she just kept talking over me. It is very hard to get your concerns addressed, and taken care of, when you come across staff that conducts themselves in such a manner. I try to treat people as I would like to be treated and when they treat me as she did, I treated her the same way. Maybe I was wrong, but this is my health, not hers, and I don't deserve to be treated like that. I am sick and tired, of being sick and tired, and I don't tolerate nasty attitudes at all. They say when people treat you poorly, it says a lot about them, and not yourself. I wrote a long letter to my GP doctor, also mentioning neuropathy, that has gone from my feet to my hands and arms now. Very frustrated, and know that this is progressing, and can cause many serious, long-term problems, if not treated. Glad I am a survivor, and ready to stand up for myself, at any point, no matter the road blocks. I am also thankful, and glad to have connected here. I am learning a lot, and have found some answers. Does anyone have a taste bud issue? Everything, even sweet things, give me that sour reaction you feel in your jaws. This is a new symptom, and through research, I think it may be related to Sjogrens Syndrome. That autoimmune disorder, also has swollen lymph nodes. I have had swollen lymph nodes in my throat, which I have been asking about, for at least 6 or 7 years now. It is nice that I have finally, maybe, figured out some of these symptoms. I am hopeful that I will get answers from the new hematologist, referrals, and finally treatment for the symptoms I have been reporting, I jokingly asked in my letter to the GP if I would get a discount, or no copay for self-diagnosing. It really takes a lot to remain optimistic, and to fight for care, but at least I know tomorrow is a brand new day, and I have so much to be thankful for. Take care all!