Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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gina5009 | @gina5009 | Feb 18, 2023

In reply to @loribmt "Hi @kitkat1070 Welcome to Mayo Clinic Connect where you’ll find you’re not alone in this new..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Feb 18, 2023

In reply to @gina5009 "I suddenly developed Trigeminal Neuralgia (most painful thing I have ever had). Neurologist requested some lab..." + (show)

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?

gina5009 | @gina5009 | Feb 19, 2023

In reply to @loribmt "Hi @gina5009 The indignities we experience as we age don’t seem fair, do they? It’s wonderful..." + (show)

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

raye | @raye | Feb 20, 2023

In reply to @mommatracy5 "Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find..." + (show)

Regarding Gina’s “life is a waiting game”

Life is a sexually transmitted terminal disease.

May we all enjoy our journeys!

redgiles | @redgiles | Feb 20, 2023

In reply to @kitkat1070 "I was just diagnosed also. Very confused about the whole thing..." + (show)

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

Patty, Volunteer Mentor | @pmm | Feb 21, 2023

In reply to @redgiles "I was also recently diagnosed with MGUS. I enjoyed reading response from @pmm - very good..." + (show)

Hello neighbor! I’m glad you found this group. Some very nice people and very informative. Thanks!
Patty

Patty, Volunteer Mentor | @pmm | Feb 21, 2023

In reply to @raye "Regarding Gina’s “life is a waiting game” Life is a sexually transmitted terminal disease. May we..." + (show)

Raye that made me spew my coffee! Can’t argue with that. Have a good day trip.
Patty

raye | @raye | Feb 21, 2023

In reply to @pmm "Raye that made me spew my coffee! Can’t argue with that. Have a good day trip...." + (show)

Patty,
You started my day with a smile on my face! And I’m helping with that spewed coffee.

Sending you mutually beneficial gifts wrapped in arms: Hugs!

Cheers!

gina5009 | @gina5009 | Feb 22, 2023

In reply to @missypurtee "Hello from Galveston not far from MD Anderson. Can I ask what routine test diagnosed it?..." + (show)

Beta-2-Microglobulin, Serum/Plasma 2.0 mg/L

gina5009 | @gina5009 | Feb 22, 2023

In reply to @missypurtee "Hello from Galveston not far from MD Anderson. Can I ask what routine test diagnosed it?..." + (show)

Immunoglobulin G 740 mg/dL
768 - 1632 mg/dL
Beta-2-Microglobulin, Serum/Plasma
Component Your Value Standard Range Flag
Beta-2-Microglobulin, Serum/Plasma 2.3 mg/L

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