← Return to Anyone else have Symptomatic MGUS?

Discussion

Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

Comment receiving replies
@shabbalv55

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...

Jump to this post


Replies to "Good afternoon to all! I am new to this,, having recently discovered my diagnosis of MGUS...."

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
🦋😊🌷