Anyone else have Symptomatic MGUS?

Your symptoms sound exactly like mine. I am 47. I was diagnosed two years ago. I live in Tuscaloosa, Alabama and I cannot find a doctor who will run further testing on me. I need help.

Thanks so much for your kind support Ginger, I really appreciate it 🙂
I’m sorry you’ve had to go through that journey, and it’s great to now hear you have compassionate care from your current oncologist. I’m unable to get a second opinion without going without monitoring for extended periods and I’m concerned it’ll result in delay in potential disease advancement discovery to SMM considering I’m high-intermediate risk, with symptoms. I live in Australia so getting private quality care is extremely expensive, and I do not qualify for private health insurance due to having way too much pre-existing health conditions (so the way I understand it, what is already in existence is excluded of has long waiting periods before it’s covered, and the monthly premiums would be extremely expensive due to a combination of existing diseases and age). The last private specialist I saw cost $450 for 15 mins, and the out of pocket was around $420.
So I’m within the public health system. I’m thankful to have it, however the wait times are in the years.
I actively advocate within the current system (both with the medical staff I interact with for my own medical situation, as well as on a state and federal level, raising awareness with govt and other organisations for the benefit of vulnerable people in society) however there is somewhat little onus for medics to be receptive / responsive to individual patient needs, so often individual circumstances are overlooked (like social situations, variances from mainstream symptoms or unusual reactions to mainstream treatments - in my case, due to not responding to treatments, I have been declined further care because I do not fit the current offerings of meds/standard of care.
Hence why I engage in systemic advocacy 🙂
Thank you again for your reply, I really appreciate it!

mgrspixi25 I'm so sorry to hear about your struggles there, including the wait times. I'm recently diagnosed IgA MGUS and dual AUS/US citizen. I've been considering moving back to NSW or VIC for what I thought would be more affordable and prompt care compared to the U.S. public healthcare system (I don't qualify for US Medicare or Medicaid, so pay for minimal care on our state health insurance.) I have family at Wollongong and friends throughout the system, and I used to work on cross-state research coordination, so am frustrated to hear about the barriers.

Hello,

I was just diagnosed with MGUS. I am 42 yr old white woman.
Weight loss 30 lbs
Skin rashes
Itchy skin
Soaked sweating at night
Enlarged tongue
Very fatigue
Neuropathy
Bad hip and back pain
Blurred vision
Ringing in ears
High heart rate when doing nothing
Dizzy
Bouts of diarrhea and constipation
Kappa/lambs ratio 10.5 (high)
Bence Jones in urine
M-spike 2
Bone marrow showed 5% plasma cells
IGA 953 (normal under 425)

Docs thought it was Amyloidois but they can’t see any in my fat aspirate or bone marrow.

I can’t sit back and deal with this I want to feel better. Any advice? Anybody else dealing with this?
Would love to know more about any of your numbers and issues.
I can’t live like this and believe there is more my doctors can do. Want my life back.
I was a fitness freak for years then over the last year all this started happening.

Thank you! 🙏

I also am in same situation as you.
I have many of same symptoms as you do.
Lately I have been having increased blurred vision and don’t know why.
I do use eye drops for my dry eye condition.
I too am at a standstill with my neurologist, and my hematologist-oncologist who is watching my MGUS levels.
So far so good.
It’s tough when noons knows what’s wrong with you or being told that they can’t help you.
My hematologist is sending me for a skeletal body X-ray to make sure I have no tumors anywhere in my body.
Had one last year and it was fine.
I’m waiting to hear about having plasmaphoresis at the hospital.
After that I might be approved for a new drug infusion Retuximab that’s been recommended by my neurologist.
I guess there’s nothing else I can do but try a few new treatments and maybe one will help me.

I also am in same situation as you.
I have many of same symptoms as you do.
Lately I have been having increased blurred vision and don’t know why.
I do use eye drops for my dry eye condition.
I too am at a standstill with my neurologist, and my hematologist-oncologist who is watching my MGUS levels.
So far so good.
It’s tough when noons knows what’s wrong with you or being told that they can’t help you.
My hematologist is sending me for a skeletal body X-ray to make sure I have no tumors anywhere in my body.
Had one last year and it was fine.
I’m waiting to hear about having plasmaphoresis at the hospital.
After that I might be approved for a new drug infusion Retuximab that’s been recommended by my neurologist.
I guess there’s nothing else I can do but try a few new treatments and maybe one will help me.

Sorry to hear of your recent diagnosis of MGUS. I think you’re much better off there in the US, because to see a private specialist here is always over $200 per 15 mins, and the Medicare rebate is only around $38 (most specialists charge around $350 per 15mins, with $38 back from Medicare). If you have multiple health conditions, with multiple specialists (I have 7 different specialists, so I pay around $300 out of pocket for each appointment, and I have around 1-4 appointments per week on average. Then many of the tests that are required have been completely removed off of the Medicare item list, so for eg I have heart MRIs that cost over $800 with zero rebate each and every time I have that scan, medicare has removed lots of essential items off the item list, so more and more tertiary care items like scans, tests, and clinical investigations are 100% out of pocket, and run into the thousands (a patient needed a stress test at the cardiologist while I was there, and I overheard the cost was $1800 out of pocket). It’s become so hard/essentially impossible to get affordable health insurance if you have pre-existing conditions, also. I was quoted $10,000 a year premium for four years, only claiming on my right forearm during that time (the only area of my body that hasn’t had an injury or illness),then at year 5 I could get the basic cover (still paying $10,000 a year premium), and at year 7 (and $70,000 later), I would get access to the next level of care items, and so on. I don’t have a lazy $70,000 in my pocket to give away for essentially nothing, while I also pay for current care, so I politely declined. The worst bug is if you do have private insurance and then try to use it, the bill is even higher despite not being able to claim on the insurance! It’s insanity. But, for knee surgery I am out of pocket $20,000 in the public system, I’ve had other public system surgeries where I’m out of pocket $12,000, $8,000, $30,000, etc, and so if this was the private system, it would be much higher without useable private health insurance). It’s becoming common here that people sell assets and homes to pay for health care - I have sold my home twice to do so, and then worked around 90 hours a week to get a home again (which in itself is incredibly stressful, let alone with illness and injury/recovery, and no appropriate rehab because I can’t afford it). I was in Port Kembla hospital after spinal surgery (I suddenly lost feeling in my legs due to catastrophic disc compression on my spinal cord, which was a result of previous injury - hit by a car and tossed into oncoming traffic, so my back isn’t good), and I was unable to move off of my back. The room I was in had a birds nest thriving in the defunct air conditioning unit that was installed in the window, which was full of next debris, and smelled like bird droppings, and I was left there for 4 days (no assistance to wash or eat). I became covered in bird lice, blotchy red with bites all over my body and scalp, and the hospital called in security to speak to me because I kept complaining - security threatened me with a psych hold due to my ‘florid delusions’ of the lice. All the while you could hear the birds scraping and chirping inside the defunct aircon unit hanging out of the window. Nobody examined me, but when I pulled my covers off, there was pustules and bleeding. I finally moved enough to reach into the draw and get my phone and sms’d someone I knew to come remove me in the middle of the night. Where I was located - I realised once they wheeled me out - was a completely closed off area of the hospital, apparently closed for renovation due to health risk to patients. There was nobody around, and they took me home, where I laid for a few more weeks, unable to move. I had access to water and snack bars, which I keep under the bed in case I ever have illness and can’t get out of bed.
That’s the kind of state of affairs here. Some public hospitals have sewerage seeping up through the floor drains, unable to flush patient toilets, and smell like you’re laying in a bed beside the town sewerage treatment plant. I’ve been in public hospitals where they’ve stored mountains of soiled patients sheets and garments next to my bed for over a day because the laundry service isn’t operating.
That’s NSW health. I hear it’s not as bad in Victoria. Canberra is becoming like NSW.
Stay in the States, would be what I would say. Unless you’ve already had contact with a person here that can assure you the care you will receive will be monitored by them, don’t do to hospital.
You can read reviews of NSW public health institutions online, and sadly see how bad things are. I’ve left many times for my own safety - safer to be at home alone than at risk of harm from poor/dangerous ‘care’.
There’s many barriers, but worse is what happens to you once you’re there.
Even in surgery..when being induced for surgery, the anaesthetic doctor didn’t turn on the ventilator, so no air was coming through the mask which was pressed down over my face. I twisted my face out, gasping, and letting him know the vent wasn’t on and no air was coming - his response was to tell me to stop lying and this is not the time to allow my ‘florid panic’ to ‘ get the better of me’, and he called for the nurses to hold me down at my arms and legs, while he forced the mask over my face..I passed out, due to being suffocated, and they realised that nobody had injected the anaesthetic drug, and that they were actually suffocating me because someone realised the ventilator actually was NOT turned on. They then apparently had to resuscitate me because I arrested. This was all told to me once I woke up after they did the procedure - the doctor was laughing and acting like it was a funny joke, something that was a bit of a ‘hiccup’ in proceedings. He laughed the entire time, and then said he had to go. This was at a major hospital rented by the NSW govt health system, located in Darlinghurst.
At that same hospital, after a different surgery, I suddenly woke up gasping for breath, in immense pain, with a sheet over my face, amongst a bunch of steel trays and empty beds, in a dark corner.. it was when I screamed on waking this way, that someone came over, and asked if I felt strange - as far as I could tell, I was placed to the side away from other patients because I had stopped breathing, and they had pulled the sheet over my face. The nurse who came to the bed said we do not have a bed for you on the ward - which was supposed to have been there for me to go back to after this operation (so they’d cancelled my bed on the ward) - so they wanted to assist me to get dressed (my items from the ward were sitting on my legs in plastic bags), and send me home, which I refused. I still to this day have no true explanation for what happened to me during that operation, however I have never felt the same since.
Please stay in the States 🌺

Hello,

I was just diagnosed with MGUS. I am 42 yr old white woman.
Weight loss 30 lbs
Skin rashes
Itchy skin
Soaked sweating at night
Enlarged tongue
Very fatigue
Neuropathy
Bad hip and back pain
Blurred vision
Ringing in ears
High heart rate when doing nothing
Dizzy
Bouts of diarrhea and constipation
Kappa/lambs ratio 10.5 (high)
Bence Jones in urine
M-spike 2
Bone marrow showed 5% plasma cells
IGA 953 (normal under 425)

Docs thought it was Amyloidois but they can’t see any in my fat aspirate or bone marrow.

I can’t sit back and deal with this I want to feel better. Any advice? Anybody else dealing with this?
Would love to know more about any of your numbers and issues.
I can’t live like this and believe there is more my doctors can do. Want my life back.
I was a fitness freak for years then over the last year all this started happening.

Thank you! 🙏

Oh wow, that all sounds nightmarish - so sorry you're going through all that. I can't seem to get my head around the fact that wealth is literally tied to morbidity and mortality. I wonder where a supportive system exists. I know we can migrate to NZ and wonder how the care is there.

It's sounding like the costs between US and AUS care are likely similar, but that of course, a fancy job will bump us up into better care. I hope you get answers and some relief.

I'm sitting tight in my US state right now to max out our out-of-pocket maximum (one of the benefits of living in the poorest state). I'll do a lot more research before deciding where to go next. Another huge advantage of returning to AUS is that they minimize fracking (compared to the US) and don't have the nuclear weapons and power industry that likely contributed to my MGUS (I've spent 5-6 years in weapons testing "downwinder" areas). Can't make this stuff up. Utterly heartbreaking.