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?

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

j2c | @j2c | Jan 5 11:58am

In reply to @loribmt "I had to read through your story a couple of times! Wow, you could write a..." + (show)

I, too live in the northern parts of U.S., and a small town and nature is my favorite place to be to heal and soothe what ails me...well, almost! My feet are very important, and neuropathy sure set me back but I try to stay active, summer or winter and fishing, hunting, wildlife viewing, hiking, exploring new scenic places is a great medicine, and has "zero side affects!"😉 I am so glad to have found this site/forum to read and correspond with others who have some symptoms like I do. I can read some of these symptoms and struggles and realize, I'm not in too bad of health condition for a 65+ of age person. I have friends who are much younger and have far worse health than me. One friend told me, when he wakes up every morning, the medicine he takes, and he said it looks like a "bowl of cereal!" I wanted to laugh, but my heart wouldn't let me! Hope we ALL find a solution to our health problems and can live and ENJOY our ONLY life till the clock quits ticking!!

Lori, Volunteer Mentor | @loribmt | Jan 5 8:20am

In reply to @ravenh "I am also n Fl. Central part. Welcome home" + (show)

Hi @ravenh I’m anxious to return to the warmth…we’re not there quite yet! My husband has a couple of appointments to get out of the way and then we’ll be zooming our way back to the gulf…panhandle area. It’s not as warm as the peninsula but even when it’s 50s or 60s it’s a heckuva a lot warmer than 5 degrees. 😉

ravenh | @ravenh | Jan 5 7:37am

In reply to @loribmt "I had to read through your story a couple of times! Wow, you could write a..." + (show)

I am also n Fl. Central part. Welcome home

kayabbott | @kayabbott | Jan 5 7:19am

In reply to @pmm "@kayabbott, hello. I have celiac as well. My understanding of the connection between Celiac and neuropathy..." + (show)

Good luck on that. I used to think doctors were like research scientists, and some are, but most are more like plumbers fixing leaks after they appear. My neuropathy was diagnosed by a neurologist in 2016 following MGUS. I suspect celiac and MGUS both influence neuropathy. My celiac spread to collagenous colitis (microscopic colitis) which I control by not eating other things (like NSAIDs); most GIs aren't familiar with it so if you have colitis flares even with gluten free, that is a possible reason.

Patty, Volunteer Mentor | @pmm | Jan 4 7:53pm

In reply to @kayabbott "I was diagnosed with Kappa light chain MGUS in 2016. M proteins showed up last year..." + (show)

@kayabbott, hello. I have celiac as well. My understanding of the connection between Celiac and neuropathy is that the antibodies created in response to gluten ingestion is what causes the nerve damage. It sounds as though like me, you are compliant with the gluten free diet. Who knows?
I wish that physicians (I’m generalizing) would take the discomfort of our neuropathy seriously. Whatever the etiology, it is life-changing as it impacts comfort and level of activity. So you’d think that it would be important enough for them to get excited about.
At any rate, no physician has ever connected those dots for me. I’m going to bring up celiac induced neuropathy to my PCP or hem/onc doc and see how many dots end up on top when I roll those dice. Thanks for that suggestion!
Patty

nsnipes11 | @nsnipes11 | Jan 4 12:32pm

I, too, have MGUS and neuropathy. I was diagnosed with MGUS in 2014, so ten years ago. I've had peripheral neuropathy for about five years prior. My first experience with neuropathy was so bad I could barely walk. It took months before the searing pain wore off. Now, my feet and lower legs are completely numb. I don't have any of the shocks that went with the neuropathy when it was first diagnosed. While I don't have much pain, I do have waves of tingling/shakiness which is very prominent when I go to bed. The only way I can sleep is to take two gabapentin capsules and a Tylenol. If I don't, I have vibrations from my feet all the way to my head. So far with MGUS, I only have a 1.5 M-spike and a few highs and lows of other lab work. So far, so good.

Nan

like2dance2 | @like2dance2 | Jan 4 12:19pm

In reply to @loribmt "Welcome to Connect, @like2dance2 Your @name made me smile! 💃 I enjoy dancing too, but apparently..." + (show)

Glad I made you smile. About the aneurysm, I don't think the brain surgeon is at all concerned as it was discovered in November and my appointment with him is not until January 20th. It is small so probably not a huge deal. So I haven't asked about dancing and will just carry on as usually until told otherwise.

canadabob | @canadabob | Jan 4 11:02am

I was wondering, while I wait for an appointment with a hematologist, if someone could help clarify one of my test results.

I'm in Canada and maybe reporting is a bit different, but this is how it shows on my labs.

*******************************************************************************

Protein Monoclonal Band 1 : 2.1 g/L ( *Note that this is per L not dL)

Known case of IgG kappa paraproteinemia.
A band persists unchanged in gamma region. Slight background gamma
suppression.

Light chains Kappa Free: 17.5 mg/L
Light Chains Lambda Free: 10.6 mg/L
Ratio: 1.65

******************************************************************************

Thoughts?

Lori, Volunteer Mentor | @loribmt | Jan 4 9:57am

In reply to @gabadoo24 "I have been diagnosed with a rare CLL, MGUS, and NXG. B cell therapy is helping..." + (show)

Welcome to Connect, @gabadoo24. I also had to look up NXG as I’m not familiar with that acronym. That’s quite a rare condition. While we’re waiting for other members who may have NXG to pop into the conversation, it’s great to have you here in the MGUS support group where you’ve already been greeted by @allstaedt57 and @nancyworld.

You’re also being treated for CLL. What types of treatment are you receiving?

Lori, Volunteer Mentor | @loribmt | Jan 4 9:46am

In reply to @j2c "I use to ride bikes up to August of 2022 and got COVID in early August..." + (show)

I had to read through your story a couple of times! Wow, you could write a book with some of your adventures…medical and otherwise! You sound pretty rough and tumble…not much holds you back, that’s for sure!

Neuropathy is a pain in the…well, anywhere you have it! It’s not uncommon to have those symptoms with any type of bone marrow/blood disorder along with age, medications, inflammation, diabetes, etc.. I’ve gone through it myself and it’s no picnic

There are quite a few conversations in the neuropathy group that you might find helpful.
Here’s just one of many:
https://connect.mayoclinic.org/discussion/neuropathy-of-the-feet/

Here is the link to the neuropathy group so that you can look at all the discussions happening. Don’t hesitate to pop into any chat!
https://connect.mayoclinic.org/group/neuropathy/

I hope you can dust off that bike when the weather gets a little nicer…well, that depends on where you are! LOL. I’m in the cold northern part of the US right now. Getting ready to head back to Florida after a holiday break up here with family.