Does anyone else have MGUS?

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

@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

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.

I am also n Fl. Central part. Welcome home

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. 😉

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!!

I was just diagnosed with Monoclonal Gammathopy due to increased protein levels in bloodwork. I’ve researched this and am reading there is no treatment however, it can progress to blood cancer. Anyone who has or had this have it progress to cancer?

I was just diagnosed with Monocolonol Gammathopy. I’m reading there is no treatment however, can progress to blood cancer and affect the bones, Multiple Myloma. When were you diagnosed and has there been any adverse progressions? I had a bone scan today and will wait for the results.

I was just diagnosed with MGUS. I’m reading there is no treatment and many can live with it for decades however, it can also progress to blood/bone cancer. I had a bone scan today and will await the results. Did you have a bone scan? I have no symptoms. It was found during routine bloodwork. What has been your experience thus far? What is your Doctor telling you?

Hi Debra @oldladydebra1 , welcome to the forum. There are many people living with MGUS here and a few who have progressed to smoldering Multiple Myeloma or Multiple Myeloma. There is a lot of information out there when you Google MGUS. How was your condition diagnosed?
I think most of us scrambled around looking for answers related to the disorder and what we could expect. The truth is that there are so many variables that my story will be different than yours. Yours will be different from the next person. Although it’s theoretically symptom free, MGUS affects different people in different ways. I have developed neuropathy in my feet for instance.
I suspect that you will get blood work done at regular intervals. I get mine every three to six months. The results take a while to learn to interpret to know what to look out for. I rely heavily on my hematologist/oncologist to interpret these for me.
The bad news is you have MGUS. The good news is that MGUS is not cancer and for most of us, the threat of it advancing to full Multiple Myeloma is small. And also good news, if it does, the treatment options are much improved over what was available previously.
Try to relax. It’s not easy, I know. Write all your questions down and insist that your doctor sit down and answer every one of them. Make sure you have a doctor who is an expert on Multiple Myeloma.
I hope you find this forum useful. There is great support here and excellent members.

Wishing you the best possible outcome. Patty