Anyone else have Symptomatic MGUS?

Hey there Leslie2121, yes I think it would be a very good thing to find out what type of MGUS exists, because (how I understand it) theres risks that are different for each type, in terms of not only progression, but systemic symptomatology.
And I also have read that having a reduced uninvolved Ig is detrimental to immunity - that is certainly the case for me in terms of both infection susceptibility and limited/stunted vaccine response.
That’s wonderful the appointment with Dr Mikhael went for a full hour! 😀 that would cost around $1000 here in the private system 😅
I’m pleased to hear the medication to treat osteoporosis helped, and I’m also sorry to hear you had a compression fracture - I hope it doesn’t give you trouble these days 🙂
I don’t have osteoporosis; I believe the issue I have is thickening of cortical bone, which is discussed here: https:// ashpublications.org/ashclinicalnews/news/3669/Understanding-Bone-Disease-and-Fractures-in#
Remove the space and the link hopefully should work (I still can’t post links). My bones are painful and have been since I have been putting on weight without increase in body size - which makes me think there’s some considerable activity in skeletal remodelling of some kind. Oddly, as a younger person I would have random bone pain and fatigue that kept me mostly sleeping for a few days at a time, then I would recover. I also didn’t have long bone fractures despite some transverse trauma/flex applied (a 220kg motorcycle landed squarely on my shin at speed, up against a concrete right angle kerb, but the only effect was a kind of cortical bone small crush injury at the pivot point of flex; I also had a 130kg man accidentally fall onto my arm which was trapped on an angle between the floor and a wall, his foot coming down full force on the middle of my forearm, which I felt flex, small-splinter, but not break. Years later I had an X-ray of that arm and it just shows barely any trace of bone injury. The only time I’ve had bones shatter is under very high compression force, due to a high force “rag doll” traffic incident where I was hit and then thrown into oncoming traffic). Apparently my bones don’t appear perfectly normal on image examination, but an explanation isn’t thus far clear.
Some bones have completely solidified, without any medullary content at all remaining (my jaw is mostly solid now, and tooth extractions via pulling is not possible because the roots are encased in solid bone besides the blood vessels).
It’s really nice to hear you’re closer to family, and I hope the new specialist is receptive to supporting proactively with good monitoring and listens to any changes if they do eventuate. 🙂
Thank you kindly for the well wishes - I really appreciate it 🌺

Very interesting isn’t it, regarding what may or may not influence/support MGUS 🤔🙂
What diet does imho is either contribute to some sub clinical inflammatory processes based on the interaction of gut integrity and microbia (an entire topic in and of itself - there’s some very interesting research done in this area to date), or it can provide mitigation for inflammation via antioxidants and support to the gut integrity and microbia. And from what I’ve understood (keeping in mind I may or may not be correct) is that the underlying reason for and against certain foods is the propensity of that food to either contribute to or mitigate inflammatory processes in the body. From what I understand inflammation is happening as a process connected with stressors on the body, as well as general repair and maintenance as a result of wear and tear.
An interesting point regarding additional adipose tissue (and this is another topic due to the different types of adipose cells, however for now I’m generally referring to the adipose tissue that is considered to be unhealthy to have in abundance) is that it contributes to inflammatory processes, and inflammatory processes contribute to MGUS and MM: https:// www. ncbi.nlm.nih.gov/pmc/articles/PMC5653692/#:~:text=Thus%20in%20MGUS%20as%20in,pathogenesis%20of%20MGUS%20and%20MM. (Please remove spaces to activate link).
So I kind of get the feeling that there are multiple contributors to essentially a chemistry lab of inflammatory reactions in the body, and that in MGUS and MM for some reason we are having a problem with inflammation feeding into monoclonal gammopathy activity…. I need to do a bit more reading and pull a little more info together, but this is what I generally think is happening 🙂
So when it comes to diet, to ensure I get a balance of nutrients from as much ‘foodstuffs’ (not vitamin tablets) as possible, I combine known digestible sources of nutrients (eg I digest red meat very well) with anti oxidative foods that will have a protective effect while I munch on that red protein 🙌🏻🙂

I’m really sorry, and very disappointed as well as exasperated to hear this is happening for you ❤️‍🩹
However, I am really wanting to high five your resilience 🙌🏻 through what for all intents and purposes what sounds like a perpetual quagmire of apathy and resistance to your needs 😮‍💨
I also have taste distortion which I’ve been told is in my imagination (haha, honestly!) and have also read it’s related to Sjogrens.
I really hope the new referral leads to some practical investigation and help 🙂🌺
A discount for all your leg work would be very nice! 😀
Please do let us know how you get on 🌺
I’m glad to be here with you guys - happy days we have each other to speak with 😊

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.

Hi sliddy47, I’m really sorry to hear that😔
I hope you can find a smart, empathetic doctor asap.
I hope you don’t mind me asking, however I was wondering how you’re getting along in the mean time?
Do you have some support or family that can help out?
Please only reply to what you feel comfortable discussing 🙂🌺
I visited a neurologist the other day whom kept repeating i should be taking some heavy pain drugs and/or mind altering neuro meds (the ones used for epilepsy/depression/anxiety/bipolar - sounds like a fishing expedition and I’m not biting), despite brain changes on mri showing structural change (nothing a pain med or psychotropic will grow back), so I stood firm and said a big fat “no” several times over…all with him knowing I live alone, can’t afford even more dizziness (which many pain and psychotropic meds induce) due to the usual 4-7 falls a week (yes, a week), and diaphragm palsy (which would result in chronic hypoventilation during the day and possibly inability of my ventilator being unable to keep me alive during the night if I’m not responsive when the critical alarm sounds [power failure, or kinked hose, for instance - two things needing immediate response to prevent acute deoxygenation and subsequent hypoxaemia leading to tissue and brain hypoxia…once it gets to a certain level I’m unable to respond to save my own life, and meds that alter any part of brain or body activity involved with the act of breathing will cause significant harm or death]). The neurologist knows I survive on a ventilator when I get too fatigued to breathe independently as well as keeping me alive overnight, but is still very happy to pressure me to take meds risking breathing ability. All this does is unfortunately lead me to immediately decide that their medical degree is wasted on them, and my time is worth more than to entertain their draining company a moment longer.
The follow up he booked was in 6 months. If I followed his ‘advice’ (ahem: one way ticket) it’s unlikely I’d be in a fit state to return at that time🙄
I have no one related to me that relies on me, so I’m not so concerned anymore about what this disease does, due to the complete lack of appropriate contemporary medical care here in this public health system. However, I can definitely relate to how awful it feels to be needing help while the clock keeps ticking, and the some of the medical fraternity is blindly correlating cancer to symptoms when the two are independent of each other in some MGUS cases, and using this as justification to dismiss and deny persons with MGUS sufficient investigations into symptomatology.
I really do hope you find a good medic, and they undertake some specific testing for you 🙂🌺

Good afternoon to all! I am new to this,, having recently discovered my diagnosis of MGUS. Which was diagnosed back in 1/23 by my hematologist,, but not even mentioned to me. Anywho....:) I am currently struggling with hip pain which is getting progressively worse. I've never had pain like this before in my life. Now when I stand, to do anything there is excruciating pain in my left hip and my left foot. It feels like my whole foot and ankle are going to come out from under me. I actually had to look down to ensure it's still on the floor. Does anyone else suffer from this same issue? Xray revealed no bone fractures but this pain keeps me living on my couch or bed...

I have had your hip pain, and now have two very lovely hip joint replacements. Instant cure for hip pain. I cannot speak for foot pain, this was not part of my problem, although I also have two very nice knee joint replacements. I have had these for some years now, and I walk extremely well (without pain). The ankle joint pain may be caused by the problems going on in your knee. Have you seen an Orthopedic doctor. The new surgeries have you up and walking the same day as surgery, and able to walk anywhere in about 6 weeks. I am 92 and no wheel chair for me.
Gina5009

Hi there Shawnnyce, I’m sorry to hear firstly that the doc didn’t inform you of the resultant MGUS 🙁, and I hope you’ve been able to obtain more details as to the type? In some of the research, the progress and symptoms are different between the types - this might be helpful with regard to understanding specifically what you’re dealing with.
Having said that, the hip pain and corresponding ankle pain may be due to joint changes (sometimes a change in gait due to pain in one joint can alter movement in other joints with the result being pain and inflammation in those joints also), however the other consideration is from a neurological perspective: sometimes irritation/inflammation anywhere along the involved nerves that supply the leg can also result in hip and ankle/foot pain. The reason I mention it is because if the X-ray (I’m presuming it was of your hip?) doesn’t show overt fracture (especially if you haven’t had a recent injury or fall) or signs of arthritic change in the joint, then pending a soft tissue injury that cannot be seen on xray (and may indeed need something like a CT or MRI to be visualised), the other logical area of investigation would be neurology. Nerves can be irritated/inflamed anywhere from the spinal cord distally to the leg itself, including in places like the place it exits the spine (with possibly a disc pathology or narrowing of the foramina - the little gap where the nerve root exits the spinal canal), entrapment/tethering by scar tissue or muscle tissue (some nerves can pass through muscles instead of going around them and this may lead to compression at that location when the muscle is active), impingement adjacent to inflamed joints, and pathological irritation from disease processes that focus on nerve tissues. Nerves also often have associated vasculature, and if the blood supply to a nerve isn’t as good as it should be, then the nerve can become symptomatic. Sometimes having low back/sacrum/nerve scans can help either to include the possibility of or exclude pathology, if nothing else can be found mechanically with the hip or ankle joints themselves.
But in my experience, I’ve not had any doctor think this way. And in my situation I also have brain changes in the sensorimotor cortex on both sides of my brain which cause slow and painful movements when trying to initiate activity after a period of inactivity.
I do have nerve issues that cause pain in my hip, and leg, and down into my foot (both sides) due to a back problem, however I also have osteoarthritis in both hips, and have had joint sparing surgery on both, aiming to prevent the need to undertake joint replacement earlier than absolutely necessary.
I have had a knee replacement, however it has never healed properly due to an immune reaction to the prosthesis - I have ongoing pain and inflammation much worse than the bone on bone, years later, and the joint has never operated with any reliability. I’m currently awaiting another replacement or amputation depending on what the best solution is based on the chance of reacting to the second replacement (there was never infection - just my body ‘rejecting’ and trying to attack the prosthesis, and my own joint capsule tissue - which caused other joint capsules to then become targets of autoimmune disease resulting in painful inflammation throughout my body). I have MGUS, IgG Lambda, however I do suspect I have some other autoimmune disease that is currently not identified (positive ANA’s have never been followed up despite my repeated requests).
The reason I mention all that is to provide some context of my earlier explanations regarding the origin of the problem, and so I hope it’s helpful in some way, to provide some further insights into your issue 🙂

Hi Shawnnyce,
I have/had “hip pain” which can mean a multitude of things. I finally am going to the first doctor that understood my symptoms or took the time to think and diagnose. Bottom line is this - my sacrum and ilium’s on both sides get and stay out of whack which eventually could harm hip ball and socket but hasn’t yet. She understood the clunking sound and bone falling I get when sleeping on my side or am leaned back in a dentist chair. She is trying to train my muscle to stop spasming and pulling everything out of order. She said the muscle memory is very hard to correct. However, things are going well. There is a procedure where they can button the sacrum to the ilium if anyone has this problem. Yes I did hurt in my gluteal ball joint, lower inner upper leg down to ankle and foot. I have had relief for three months now. But, I now have resultant sacrum arthritis a
due the joint being left askew.
Maybe this will help. I hope you can get to the bottom of your pain.
Hugs and warm wishes
🦋😊🌷

Hey there teedlum, sacroiliac joint pathology is something I haven’t thought about for years, including it’s consequences on the function of the pelvis and legs. I had both sides fused (sacroiliac arthrodesis via internal fixation) due to traumatic injury, using the old style procedure where access was through the anteriolateral abdomen, however the ‘new’ method is much simpler, easier, and you end up with much less hardware in your body and difficulty in recovery - the ‘pins’/anchors are simply placed via very small incisions adjacent to and just lateral of the joint (contrary to the scars resultant from the internal fixation procedure that extend from the posterior superior iliac spine to the pubic symphysis, along the entire iliac crest, to provide access vis the abdomen to the anterior surfaces of the SI joint). Having had fixation, I highly recommend it, based on how well it treats the instability and resultant symptoms. And especially if it’s done via the external fixation method! 🙂🌺
The level of instability you describe sounds very mobile; the kind of instability I had (complete rupture of the anterior and posterior sacroiliac ligaments bilaterally) was totally unable to be rectified with exercise and retraining muscle memory - the muscles aren’t designed to ‘take over from’ lax or torn ligaments (that’s kind of like saying that any muscle can do the job of a torn or stretched ligament which is not possible because ligaments provide joint stability while muscles participate in actioning movements, relying on joints to be intact with sufficient ligamentous stability present to facilitate said movement) and ended up ‘pulling’ the alignment of the joint surfaces out of whack due to a compensatory spasm that would inevitably reoccur with each loading of the joint (where ligaments would usually take the load, preventing extreme movement in the joint space). Because primary muscle stability was impossible in my case (as determined by the inability of the muscles to function under the spasm conditions of gripping the instability as tight as possible) I had the fusion procedures, and once I recovered, the muscles returned to normal function. Here’s a link explaining more about how the ligaments and joint ranges of motion function and contribute to movement: https:// http://www.physio-pedia.com/Sacroiliac_Joint (please remove spaces - I am a new member and unable to paste links at this time).
All the best to you 🙂