Does anyone else have MGUS?

I was also recently diagnosed with MGUS. I enjoyed reading response from @pmm - very good advice. I am about same age as her. Was diagnosed last August 2022. I already had my "foot in the door", so I go to MD Anderson/Houston for appointments/blood work etc.

Jackie in Texas

Regarding Gina’s “life is a waiting game”

Life is a sexually transmitted terminal disease.

May we all enjoy our journeys!

Thank you for your thoughtfulness and caring. Yes, I have run the mill on medication, but I do have one I am able to tolerate Pregabalin. I take it twice a day and it helps a great deal. When I have mild pain, I paint the gums with Ambesol (baby teething medication), which again helps a lot. Following this diagnosis I suddenly had the M factor in my blood and they have diagnosed Mcus so I now have to be monitored to see how this progresses, so life is a waiting game. I am glad to have had what I had, and just continue to do the best I can with what God still decided to give me. Thank you for the reading references, I will check them out today. Have a great weekend.
Georina

Hi @gina5009 The indignities we experience as we age don’t seem fair, do they? It’s wonderful that you’re still able to be living independently at 92…though I am very sorry for the loss of your family members over the years. Especially your children. I always remember my grandmother saying parents should never have to bury their children because there’s no pain like it.
You’ve been through and endured quite a few medical adventures over your lifetime. You surely didn’t need to have trigeminal neuralgia tossed into that mix. It’s one of the worst causes of facial pain. Years ago there wasn’t much that could be done for the pain but there have been several break throughs in treatment.

There are a couple of informational articles that you might want to read:
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347
~~~
https://www.healthline.com/health/treatment-for-trigeminal-neuralgia

Trigeminal neuralgia – Symptoms and causes:
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

— Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/

— Trigeminal Neuralgia*: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Have your symptoms eased at all?

I suddenly developed Trigeminal Neuralgia (most painful thing I have ever had). Neurologist requested some lab work and the M factor appeared. As you say, I am currently seeing a Hematologist in 3 month intervals with lab work. As I have said at 92 and all the other life medical problems, this just seems like one more blip on the horizon. I have buried almost all of my family including my daughter, and have only my son to worry about now, so I am happy to have one more day and the blessings of God. I have two knee replacements, two hip replacements, a shoulder replacement, and a double Mastectomy (one a Radical) and I am still living pretty much on my own. I am probably one of the luckiest woman alive. Thank you for your kind words, they certainly help make it one more day.

Hi @kitkat1070 Welcome to Mayo Clinic Connect where you’ll find you’re not alone in this new diagnosis of MGUS.
I just wanted to make sure you see this very informative and comforting reply by @pmm who is sharing her experience with MGUS here: https://connect.mayoclinic.org/comment/812816/

How was your diagnosis discovered? Was this through a routine physical or were you having symptoms?

Greetings! It is all very confusing at first. I had so many questions and made a list. I think I vexed my poor oncologist/hematologist. MGUS is a wait and see thing for most of us. I predict that you will get blood work done every 3 to 6 months and your physician will monitor to see if anything progresses.
Did your doctor talk to you about what the plan is to monitor your health?
I was diagnosed almost 2 years ago and go in for bloodwork every three months. Today, as a matter of fact, I’m going in for my quarterly bloodwork and a CT scan to check to ensure that I have no lesions developing on my bones. That would be a red flag for progression. I feel great, and I am not worried. I am asymptomatic. I also have type two diabetes which is well controlled, and there is some neuropathy that accompanies that as well.
On those days when my cup is half empty, I am mad because I have this additional worry but most days, when my glass is definitely have full, I am grateful for the scrutiny that my health gets because of the MGUS. If anything does become a problem treatment will start early.
I’m 70 and active. I want more quality time with my family and to knock a few hundred things off my bucket list.
Don’t let this diagnosis rob you of anything due to anxiety. Ask lots of questions. Make sure you have a good hematologist/oncologist who takes time to explain things and then live your life.
Patty

I was just diagnosed also. Very confused about the whole thing...

I too have been recently diagnosed with MGUS. It was found when I was being tested for PMR (Polymyalgia Rheumatica). I was told by my Dr. that with MGUS, there are no symptoms, but instead they monitor you for progression. I can stay in the MGUS stage for years or it could progress. They don’t know which way it will go. So we will watch it, it is out of my control and I will try and live my life to the fullest. I will try and exercise each day, eat right, get as much good sleep as possible and handle stress appropriately.

Dr. Google is NOT the place to look things up. It can lead you down a rabbit hole. My advice is to just listen to trusted medical professionals. I doctor at Mayo who are experts in the field of MGUS, multiple myeloma, smouldering myeloma.

Ask questions and keep asking questions until you feel you understand the answers. That is what you medical team is there for.

I also have been just diagnosed with MGUS, but I will be 92 in March. I have gone this round with Breast Cancer at 36, and Dermatofibrosarcoma at 56. For me, this is just one more wait and see. No one seems very excited at this point, and it has just become one more thing I have to watch. My suggestion is to go on with your life, and try not to worry too much about something that has not happened as yet, and may never happen. I have been told, I may never see anything different, and I do not know how long I have had this. It was found, only because I suddenly developed Trigeminal Neuralgia and had some testing for that. Life is good, enjoy, don.'t let this diagnosis take over your life