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Anyone else have Symptomatic MGUS?
Hi, I just joined. Had MGUS diagnosis since august 2021, however I had elevated paraproteins for years beforehand (docs then just refused to refer me to haematology). I have many of the symptoms that have been mentioned by other members and declined to be attributable to MGUS by doctors, including peripheral neuropathy, blood viscosity changes/inflammatory marker changes, protein in urine (BenceJones), memory decline, cognitive slowing, tinnitus, vision changes, constant drenching night sweats (nothing to do with menopause - proven by labs) with chills, and bone pain that has been on a consistent increase this last 8 months. I also have dizzy spells unlike ‘feeling dizzy’; they correspond with burning bone pain in my spine and ribs, and a sharp increase in tinnitus.
I have IgG Lambda MGUS, low IgA (I’m guessing due to crowding by monoclonal IgG plasma cells), and the light free chain ratio is outside of accepted range (0.09). I’m classified as intermediate high risk, due to level of proteins. My bone marrow biopsy/aspirate said 8%, however I do not ‘feel’ the same as I did when that was done back in august of 2021 - I have significant advancement of symptoms since then, including an ENT urgently removing tonsils due to thinking I might have lymphoma because I have two mystery ‘growths’ in my mediastinum that may or may not be lymphoma (the thought was, if I don’t have lymphoma in my tonsils, then it’s unlikely to be in my chest in these two growths, however I have found no evidence to support this, and doctors have not wanted to take a sample of what is in my chest).
The fatigue came on around 8 months ago with the bone pain, and it’s debilitating some days (I am a former fitness model into my late 40’s) despite the desire to exercise (which is often very painful in bones despite fatigue). I’m now 50, and my entire body has changed from strong to relatively weak, especially considering the impact of peripheral neuropathy on hand and foot function/coordination.
I don’t have diabetes, my blood pressure is consistently slightly low, my cholesterol is and always has been great, and I make all of my own food (including breads, yogurt, and cheeses) from scratch. I have zero cardiac atherosclerosis/calcification, however I have had spontaneous pericarditis twice recently.
I just think that the plasma cells are slowly on the increase, and the more there are, the more they’ll make, so it feels like I’m at a stage where it’s turning into SMM.
But all the haematologist says is “Nah, it’s not related - I’m waiting for CRAB”. I have consistently high serum calcium, and consistent anaemia.
I’ve had symptoms since I was in my mid thirties, so my gut says I’ve had MGUS for around 15 years now.
Besides that, I have lung and bowel disease that developed alongside recent worsening symptoms of MGUS (at least, I attribute them to MGUS considering so many other people seem to have similar progression).
It would be great to speak with others who have MGUS and if you have any particularly interesting research articles to share (I’m a former allied health professional and love scholarly research papers) I would love to read them (I’ve found quite a few, however it’s always a treat to read what other people have found too).
Looking forward to hearing from you my fellow MGUS people 🙂
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Thanks Patty. It’s honestly heartbreaking for the world over that people are subjected to such disregard and maltreatment. Imagine if the people who worked in the health system actually strived for provision of appropriate care as their primary objective…I think even within the junk systems we have, there would be at least a 30% aggregate improvement in proficiency, service delivery, accuracy in diagnostics, and efficient use of resources.
I’ve never seen a process worker leave their station, go have a coffee and an hours’ chat with their colleagues while their task goes without attention for that entire time - the whole factory would need to shut down! However, the public health staff do exactly this, multiple times a day (reporting this from a patients perspective from being in hospitals many times over, as well as a former health worker seeing it from the ‘inside’ - which by the way was infuriating because I worked my rear end off to serve the people who needed my help as quickly and efficiently as I could, so watching these jokers stand around for 80% of their day used to give me an eye twitch to say the least!) so it goes without saying that the entire integrated system comes to a grinding halt!
Process workers get so little money, yet they work precisely, efficiently, and diligently, otherwise they get in trouble or lose their job.
I’d like to see each and every health worker do a mandatory placement in a processing factory for 4 weeks out of their study placement, so they learn the value and function of integrated systems, responsibility, and just doing your damn job when you’re on the clock instead of treating it like your own private mates club you visit each day and get paid for, while ‘annoying sick people’ invade your club venue.
The amount of blanket praise heaped on health systems and the instilled air of superiority in the medical profession mean that these people think they are something they are definitely not, and there needs to be a massive reality check handed out to bring them back down to earth. Sure, there are extraordinary people that are within the health profession, but there are extraordinary people in all professions - I’ve seen truck drivers save lives when witnessing accidents in remote areas, but that doesn’t mean society calls all truck drivers heroes and godsends. Just like there are the Lucy Letby’s of the health profession, but nobody then calls all health professionals evil.
It’s just a job, not an automatic hero position bestowed upon you, and you should have passion and humble pride for what you do as a person privileged enough to be in a helper profession..if not, leave and go do something else.
Ranting again, but this is how I see it.
And to live in a so called ‘first world’ country that (in Au, at least) neglects people so badly they unnecessarily deteriorate and sometimes pass away (from significant disease states or other emotional causes) when all the equipment and facilities exist to keep them functional and healthy within their diseases, it’s just crushing.
I have people known to me from Afghanistan, and they say that living in Au, they have much worse health care here, than back home in Kabul. That’s significant.
And this is why I am as stubborn as an ox, Patty. I don’t like it, so it’s my job to say something. Hence why I advocate systemically to federal and state govt for the people needing change. 🌺🙂
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3 ReactionsIt seems all that registers is waiting and getting the worst answer of all, it sounds like a quest to find "the truth" trying to get the worst answer of all, your brain is driving you crazy. Pains are symptoms of stress and anxieties and bad thoughts that is bad for us, instead of constantly looking for what is not good, just change your attitude to hear how many good percentages MGUS patients have, they can live until the day they die without cancer. Enough searching, decided to change the painful reality with the hope of healing. The body knows how to heal itself, give it a chance
Nice sentiment 🙂
I agree there’s sometimes a psychological/psychosomatic component that can influence daily life..that is, until it isnt, and the search for physiological symptom explanations is very warranted.
Just had kidney biopsy yesterday, considering this MGUS has worked it’s way to MGRS by all intelligent estimations (haematologist, nephrologist, and I do include myself here), and with the development of even more signs and symptoms, it may indeed be the case that a paraneoplastic syndrome called POEMS as a result of monoclonal gammopathy https://rarediseases.org/rare-diseases/poems-syndrome/ has evolved, and these docs are now very pleased I’ve been recording/reporting any noticeable change, because they weren’t, until I gathered enough evidence to present my case as being potentially a paraneoplastic problem.
That’s the quintessential ‘other’ besides development of cancer, that must be watched for in MGUS.
Anxiety - interestingly - hasn’t been a part of my symptomatology, and never has been with any physiological disease process or injury; my approach is to investigate, treat, observe outcomes, and if outcomes aren’t reached (satisfactory recovery/increase in function), then restart the process. Personally, the last thing I conclude is psychosomatic origin, considering my approach does not naturally include anxiousness (that ‘worry response’ was trained out of me many moons ago, and usually after an initial slight surprise, I’m in objective discovery mode quite quickly).
Last BMB/A on 9th November confirmed progression so I’m a hair away from SMM (along with the slowly increasing serum m-spike), however the other symptoms all point towards paraneoplastic change (which I’ve informally and not-technically-correctly dubbed being ‘allergic’ to the existing ‘few’ cancerous plasma cells in bone marrow that is contributing to a bunch of parallel symptoms, to help explain it).
Anyhoo, I’m super glad I have kept looking, and rejecting the unfounded assumptions of my former haematologist (whom I dubbed the ‘office decoration’ for all the efficacy he had around the place) that there was nothing else happening besides MGUS, because that seeking approach is likely going to significantly improve my outcomes.