Does anyone else have MGUS?

Hi, thank you so much for the reply, I'm sure for those that have been in the forum for a while are tired of answering the same questions over and over and seeing the same questions but in my circumstance I literally cannot scroll more than one or two pages daily and cannot type more than a couple keystrokes per day otherwise my arms become very painful and numb similar to wearing an extra tight scuba diving suit, I've never worn a scuba diving suit but I could imagine if one were to wear a very small tight suit it would feel like my upper extremities right now. I cannot even sign my name, I have to use a stamp, my IGG numbers are in the low to mid 2000s, all my blood work is in normal ranges, my hematologist ordered a bone biopsy and a bone scan which will be conducted in November 2023. I had to stop working in October of 2022 because I could no longer perform my duties as a social worker, anytime I use my hands my wrists forearms upper arms and chest become extremely tight and numb. I've had so many tests I can't even keep track and nothing seems to be coming back with any indications of something being wrong. I hope to God I don't have multiple myeloma but if I do I guess I'll deal with it. Hopefully the tests come back negative and there's something else less invasive going on. I appreciate your reply. I have to use voice text via my email then copy and paste so please forgive any good miracle errors or spelling errors. Thank you again take care.

I have MGUS. My Dr wants me to take Tymlos to strengthen my bones. I have osteopenia & osteoporosis. I received the Tymlos today. The 20 page Medicine Guide that came with it, states this drug could possible cause bone cancer. I wasn’t told this. Does anyone have this situation?

Welcome to Connect, @monte22. MGUS generally is perceived as not having many symptoms but as other members, such as @laurinea, can attest to, they do have symptoms such as neuropathy, night sweats, etc..

I’ve found a number of conversations in the forum with other members. I realize that you’re having a difficult time being able to cull through them yourself but if you could read a little bit, there is a discussion where there is a lot of information. Here’s the link:

~Does anyone have any info on MGUS treatment or risk of progression?
https://connect.mayoclinic.org/discussion/does-anyone-have-any-info-on-mgus-treatment-or-risk-of-progression/
@nick86 had similar questions about anxiety and what to take to slow the progression of MGUS. Other members in this discussion with sage advice are @pmm and @gingerw,
@leslie2121 is taking Curcumin to help with inflammation and @remainanonymous has mentioned the possible use of Metformin to slow the progression of MGUS.

There are many other members offering up suggestions and things that have helped them. So if you’re able, please read through the comments a couple at a time.

Everyone’s case is a little different so something that may work for them may not be suitable for you. I’m so sorry you’re having such a terrible time with side effects. May I ask what you’re experiencing?

MGUS can progress into a blood condition called Myltiple Myeloma which can have some serious complications and more symptoms.
When was the last time you’ve been evaluated for your condition?

Unable to type much or scroll through comments due to my MGUS symptoms, can anybody relay any treatment options you have tried that have worked, such as prescriptions or supplements? Any insight would be greatly appreciated as my symptoms are quite unbearable. Thank you.

Article is a little old but might help someone with IgM MGUS:
https://pubmed.ncbi.nlm.nih.gov/25572169/
Quote: "We conclude that all patients with IgM MGUS and neuropathy should be screened for anti-MAG antibodies and, if positive, they should be offered treatment with rituximab."

I just came across this post and found it helpful.
https://ashpublications.org/blood/article/131/2/163/37011/How-I-manage-monoclonal-gammopathy-of-undetermined

Yes. It's still MGUS 5% plasma cells. I will followup every 4 months. I also joined the PCrowd Study at Dana Farber. Thank you for following up.

@marylou329, just checking in. Did you get the results of the bone marrow biopsy? How are you doing?

Does anyone else with non-IgM MGUS get pain in their bicep and thigh muscles. I don't know if it is something else or another symptom. I won't be seeing the haematologist for at least another 2 months (haven't even seen one yet still have only been given my diagnosis but nothing else) as I have been classed as a category 2, which in Australia means you will be seen sometime within 60 to 90 days.

There are a lot of groups on the Internet where members share their experience with MGUS OR Multiple Myeloma. I think it’s important to distinguish anecdotal information from peer reviewed medical research results.
Although I enjoy reading the experiences of others, I rely on my medical team to sort through it all. I do bring questions…lots of questions…when I visit, many of which are generated from comments I read here. I do read about research and often have it on my list to discuss when I see my hematologist/oncologist.
There is a lot to consider, even when deciding if a herbal supplement might be appropriate to add to your regimen. Some seem harmless enough but impact your blood sugar, thus compromising the impact of certain medications. Lots to consider, so first I ask, then we decide together if it might be of benefit.
I have read some pretty crazy stuff on some of these social media sites, so I do not presume anything that I read there is, or is not valid until I do some research on my own. If it’s something I would like to try, I then ask my docs about it and only then decide.
Have a great weekend, y’all!

Patty