Anyone else have Symptomatic MGUS?

Posted by mgrspixi25 @mguspixi25, Jun 20, 2023

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 🙂

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

teedlum | @teedlum | Jul 2, 2023

In reply to @mguspixi25 "Hey there teedlum, sacroiliac joint pathology is something I haven’t thought about for years, including it’s..." + (show)

@mguspixi25

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 🙂

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Mguspixie 25,
Thank you so much for your thoughtful information. I had two separate accidents that caused this problem many years ago. My heat and air man was how I found out something can be done. It took his wife over 10 years to finally get sent to the proper doctors. It’s amazing how it can affect upstream and down stream in your body.
Warm wishes

mgrspixi25 | @mguspixi25 | Jul 2, 2023

In reply to @teedlum "Mguspixie 25, Thank you so much for your thoughtful information. I had two separate accidents that..." + (show)

Hey there teedlum, no worries 🙂
I’m sorry to hear it took a long time to be recognised within the medical sphere. It’s a real failing of the medical community to remain unaware of the diagnostic and interventional approaches to address such a common problem (especially after an injury). I used to tape myself together each day (doing some serious damage to my skin) just so I could walk, using rigid sports tape, around my pelvis and upper thighs, and my lower spine. Tape off, the entire pelvis would almost dislocate off the sacrum if I tried to flex my hip (at the acetabulum - knee towards chest movement) while laying down, much worse on attempting action while standing).
You’re right: it affects not only lower limb articulation, it also impacts on spinal function, and can also impact on pelvic organ function (distal colon, bladder, and reproductive organs).
I was taping for a total of 9 years prior to being adequately recognised as having ligamentous rupture and resultant hypermobility.
I hope you can get some really great help to get you back on track 🙂🌺

sjgray | @sjgray | Jul 12, 2023

In reply to @nancy1900 "This sounds very frustrating for you. Have you gotten second opinions and thought about going to..." + (show)

I, too, am 72 and was diagnosed 3 months ago with MGUS with iron
defiency. Had iron infusion 2 months ago. No symptoms, except for anemia. My mom died this past March from multiple myeloma. I am terrified that I will eventually follow in her footsteps. I was her caregiver, so I know what to expect. Prayers for everyone with this dreaded disease.

nancy1900 | @nancy1900 | Jul 12, 2023

In reply to @sjgray "I, too, am 72 and was diagnosed 3 months ago with MGUS with iron defiency. Had..." + (show)

Dear SJgray, praying for you tonight. Praying the fear will go away. Some things we can change. Some things we can't. The thing you can change is the fear element. Take care of yourself and continue to do good as you did for your mother. The rest will fall into place.

Ginger, Volunteer Mentor | @gingerw | Jul 13, 2023

In reply to @sjgray "I, too, am 72 and was diagnosed 3 months ago with MGUS with iron defiency. Had..." + (show)

@sjgray Welcome to Mayo Clinic Connect! It's perfectly normal to be fearful of a condition that took someone close to you, that you might deal with the same fate. As @nancy1900 said, changing the fear element is important. Educate yourself as far as you own unique situation. Do the recommended watch-and-wait approach as your medical team advises. Live your life fully! Try not to dwell on the "what if" of it all, although your mind, like most of us will admit to, wants to charge down that path.

How are you doing today? When is your next appointment with your hematologist/oncologist?
Ginger

sjgray | @sjgray | Jul 13, 2023

In reply to @gingerw "@sjgray Welcome to Mayo Clinic Connect! It's perfectly normal to be fearful of a condition that..." + (show)

October, since I needed an iron infusion, oncologist wants to see me every 3 months instead of 6 months.
Thank you for the encouraging words. So kind of you.

gina5009 | @gina5009 | Aug 26, 2023

I received your reply, and it is very definitely an extremely hard life with much pain and severe medical problems, but I thought it might help you to know, I am not responding without some of the same knowledge. I never list all of my miracles, but I think you might find some comfort in knowing I truly understand.
1. at 18 months I had suffered whopping cough, and now had pneumonia. Doctor told my mother I would be dead by morning. No penicillin, no Antibiotics.
2. 14 years old. I was told I had Tuberculosis 1 year in Hospital bed, Only allowed out for Bathroom.
3. 26 years old. Post Partum Hemorrhage, 5 pints of blood. Levofed to stimulate my heart, complete circulatory collapse. I delivered Twins, first born died
4.36 Breast Cancer with Radical Mastectomy and Simple Mastectomy
5. Both knees and Both hips joints replaced
6. 55 Dermatofibrosarcoma, right leg
7. 65 Umbilical Hernia Repair
8. Skin Cancer, on collar bone
9. 74 My husband died of lung cancer
10. 78 My daughter died of a massive heart attack at age 47
11. 90 Aortic Valve Replacement
I am now 92 and still struggling thru, with the help of my son. I am being observed for MCUS and have no idea what tomorrow will bring. I have Trigeminal Neuralgia, and Raynaud's, which will be with me forever. I only leave the house to go to the doctors, but life still has great meaning for me and I wish I could give some of it to you. All of my family of my generation are gone, but I still have two granddaughters and three nieces and nephews. So life is full, and much as I would like, I cannot complain. So far, I still have my mental facilities. I am able to walk, although I do get short of breath, and I have this wonderful computer which keeps me in touch with all you wonderful people. Apparently there was much I had to learn about care and compassion for others, and as I read your journey, I am aware there is still much for me to learn. Don't give up, Keep on fighting God loves you and so do I
Gina5009

6. 65 Herni

mgrspixi25 | @mguspixi25 | Aug 26, 2023

In reply to @gina5009 "I received your reply, and it is very definitely an extremely hard life with much pain..." + (show)

@gina5009

6. 65 Herni

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If I was a selfish person, I would say “I wish I could’ve swapped places with you, because your life was far greater, with far more blessings, and far less suffering”, but I won’t, because no matter what I have survived, the most important thing is how one manages what has come across one’s path; whether it is a mountain, or a pebble is up to the individual.
What I will say is that I appreciate that you’ve shared, and I wish you all the best.

gina5009 | @gina5009 | Aug 27, 2023

Thank you for your kind reply. I think perhaps you have misjudged, but there is no purpose is trying to evaluate who has a harder life. I believe, God had a purpose as he does with all lives We have no way of judging "who has the hardest, " only that all people are faced with a crises somewhere along the way. It is the time we most need to know he is with us ALWAYS through all the pain and sufering. It is important to express this pain and find comfort from those around us. It does not sound like you have had much of this compassion. Therefore, I would ask all of you who read these words to please send this lovely lady your wishes of love and caring and sharing so that she can know, there are many people who, have never met her, that truly care about her and send her there love and support. Let her know GOD LOVES HER AND SO DO YOU.
Gina5009

mgrspixi25 | @mguspixi25 | Aug 27, 2023

In reply to @gina5009 "Thank you for your kind reply. I think perhaps you have misjudged, but there is no..." + (show)

I can kindly assure you that I haven’t misjudged; it actual fact, I have not judged at all. There *are* people who did not survive what I went through, and they are the people who deserve the spiritual support moreover than I. Women are not here today because of some of the things that have happened to them and me. They’re the people that weigh on my heart.
To think of them and then to even consider measuring what suffering is would be barbaric in nature. So, hence why I mentioned my perspective which is that the only measure of suffering is within the individual, and it’s up to that individual as to whether they feel they have a mountain to overcome, or just a pebble. It’s always individual; never measured by someone else against a third party, because that assumes the person doing the measuring knows what it was like for the other - but this is a falsehood; nobody can ever know what it is like for anyone other than themselves and to assume so is one very arrogant lapse in thought.
I wonder if there’s an idea in your mind somewhere that I am lacking something which requires a call for unknown persons to focus on me? Please be assured, this is not the case; no universal call for anything is required by me - I have everything I need, and humbly redirect away from me to others who are known to be in need of support (spiritual, physical, financial, etc) to receive that support.
In terms of expressing pain, in the environments I have been in, the opposite has been true: not expressing pain has been what has kept the situation together, so expressing pain would’ve been very destructive at the time. Now I am alone, I can express pain whenever I need. I do not want anyone around me during those times, because it hurts even more to see them watching me in pain. That is something I will not entertain (expressing pain with anyone present). However, that is not a lack of compassion from outside of myself or even for myself; on the contrary, it’s a large degree of compassion and consideration for others as well as I, especially in moments of suffering. In all moments of suffering, I prefer to be alone, and to have people near me makes me very uncomfortable - something I never want.
And I definitely do not want anyone to be focussing on me - especially people who do not know me.
Thank you for your idea, but this kind of thing makes me run in the opposite direction even further away from people. You can never assume to know anybody’s reasons why they are adverse to anything, however those reasons and resultant actions are theirs and theirs alone, and need to be respected without question 🙂
I really think this conversation has run its course - there is nothing more I can say to demonstrate what or who I am without digressing into minutiae with each consecutive reply, so I gracefully leave it here, knowing that I have illustrated my points without encroaching on anyone else’s personal space or philosophy with my own, and I have only demonstrated my position with patience and understanding, and kindness throughout 🙂

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