My heart took a hop, skip snd a jump last night and woke me up just after 2am. I was having poppers as I refer to them, multiple rapid heartbeats in a row. There’s short ones and long poppers, short is 6 to 8 beats, long goes up to 20 very quickly. More than that and I’m headed for Tachycardia(definitely not good). The SA Node in the right Atrial Chamber is the heart’s natural pacemaker. It’s this Node acting up, misfiring as you’d call it but it could trigger a fatal heart attack in me, it’s already caused three, the 2nd & 3rd near fatal.

I cried out, alright, thinking that one of those beats would jump into the short circuit of my birth defect and the implanted recorder could start mapping out the Rogue cells to be destroyed. I didn’t remember that it could cause the fatal heart attack and suddenly the poppers stopped instead. The only flaw in the recorder is it’ll only record the beats “in” the short circuit, not ones caused by a faulty SA Node. It bummed me out because if they destroy the short circuit, my heart might be able to survive treatments for my Amyloidosis. As is, it’s just about hopeless. There is some kind of herbal treatment she might try but it’s a long process. With a ticking time bomb in my chest, my lifetime is quickly running out. That’s why I was so happy and scared at the same time. March 10th, I had a dandy episode of something going wrong with my heart but again the recorder never caught it. It’s set for only one purpose, mapping the short circuit. What ever happened to my heart that day is still a mystery but it was so painful, I thought I was going home to my family and ancestors. Oh well, maybe one of these days, that $25,000 loop recorder will surprise me. Take care, wherever she is!!! My favorite joke……

I’m sorry. It must be very frustrating. Even so, four doctors should get themselves on a Zoom call or two and decide before November.
Does your treatment facility have a medical social worker? They can coordinate things like that if you have a good one.
It makes no sense to me that someone with a complex medical history wouldn’t be first in line. Ask about the social worker.
Hugs.

Sounds simple but complicated. My Electrophysiologist (Heart Rhythm Doctor) is so busy, he had to see me during his lunch break. He’s the boss of 35 other doctors , so he has no time for a conference call. My .PCP is so busy teaching other doctors, in the beginning of July I scheduled my next appointment. I set it up and guess when it is, January 6th, 2023. That’s just two of my Doctors, my Oncologist/.Hematologist is also the top boss in the Oncology Department. My Neurologist is in a different hospital altogether. Sounds simple but complicated huh. November will be here before they could all find the time.

Plus I think my Oncologist is bringing in another doctor for consolation and may also bring a Geneticist to the team. Thanks for caring. Becky

You are worth their time. I retired six months ago from my work as a medical social worker for a Children’s Hospital. I have arranged for doctors to meet to discuss patient care many, many times. They are busy guys and gals. It is their job, however, to provide the best care possible for their patients in a timely manner. If there is a social worker attached to your treatment facility do contact him or her.
We want to be good patients but sometimes being a good patient means being a squeaky wheel. I am always respectful but firm and persistent when I am advocating for myself or for someone else.

Hi, I am new here. 55 years old and dx with MGUS this past summer after a year of feeling unwell, specifically bone/joint pain and fatigue. During that year, I was probably also terribly anemic and unfortunately this was not found until this past summer --- when an M spike was found by a rheumatologist whom my PCP sent me to for my fatigue and body pain --- who then sent me to see my old hematologist/oncologist (I had thryoid cancer in 2007) who found that my ferritin was 7. Why a PCP doesn't run ferritin labs is beyond me! A year of my life...going to my PCP often, saying "I don't feel right. I'm really tired. I wake up hurting and it takes my body 1 hour if not more to limber up." I had two ferritin infusions a week apart and my anemia and ferritin are now good. Time will tell how long it lasts. I also had a lot of labs...FISH, bone marrow biopsy; just to name a few. Anyway, I don't understand it all. I will be checked every 3 months. I have a "trisomy of 11 and 14" (whatever that means), kappa with IgG....sorry, I found this page and don't have my labs in front of me. But I have a lot of labs and I really don't understand them. My hematologist /oncologist told me I have MGUS and not to worry --- every 3 months we'll look at my labs. Any advice? Thanks, and all the best to all of you!

Hi, MGUS and Beyond, friends.
@lynne756, welcome! Glad you mentioned Ferritin. Mine is currently 11 and I don’t understand why it’s low, yet other iron-related scores, Hematicrit and Hemoglobin, are often elevated. Just made a list of the declining ferritin scores in their consecutive dates in my contact list, then made an edited screen shot of this to send to my hematologist.

He advises seeing me every six months but I make appointments with him every three months. My decision due to concerns about risk factors. I’ll see him Tuesday when I hope to get greater understanding of the whole gestalt of various out of range blood test results. Googling each just feels like being in a dark room with a sleeping elephant while only being able to touch its isolated parts. What are the implications of this IgM Kappa MGUS diagnosis with its odd other blood tests? Hope to learn more about it this time while being glad it has been fairly stable but slowly elevating since 2015.
Ginger, your commentary is always helpful. Grateful hugs!

To lynne76 I know how you feel. My MGUS was found in 2020. My nephrologist actually sent me to a hematologist since my blood work for him was questionable. Am seeing my hematologist every 6 months now. Was very hard to deal with all this in the beginning but with more knowledge about MGUS and confident in my hematologist and faith I put it in the back of my mind and enjoy life and thank God for every day. Worry will get you no where. Good luck and God Bless.

Hi, Everyone. First I'd like to say Merry Christmas and Happy New Year.
I'm new to this forum, I was diagnosed with MGUS 2017 Light chain kappa IGA I kept telling the dr's that there was something wrong with me other than the usual, I have many things wrong with me 28 altogether ranges from really stiff joints from birth to diabetes to fibromyalgia to osteoarthritis. Although Mgus is the most worrying of them all I had to learn to live with it and now i feel it's just melted into all the other's, as many of them cross over each other for example i ache all the time feels like flu when i'm really bad, my bones ache don't even have the energy to get out of bed but i make myself as my fur babies need feeding. Since diagnoses i have learnt that i can no longer do anything whenever i like i have had to slow down, sometimes to a snails pace it can be disheartening at times but you have to focus on the positive and what's good in your life, and do things in small chunks (if that makes sense). I have been kept a close eye on by my specialist over the covid because my kappa and kappa/lambda ratio is going up all the time, my next app is 12th January 2023 i usually start worrying about know, anyways i hope my post will help someone xx

Greetings
Two and a half years with MGUS, feeling great, in fact all the normal blood tests are very good
The monoclonal protein increased in two and a half years from 1.9 to 2.3 - the hematologist asked to check bone marrow, I did not agree. After consulting with 3 different doctors they claimed that there is no reason to perform this test when the protein is at this level. I will mention that my IGG has been constant for two and a half years at 2700. flc 2.9
your opinion ?

I've had 2 or 3 bone marrow biopsies since learning I had MGUS 11 years ago. All were at my request, performed at Mayo Clinic JAX, and virtually painless. I did feel the lidocaine injection and
then some brief pressure, but it was over within 20 minutes after I arrived at the clinic. Bless my late husband's heart, his own quarterly bone marrow biopsies for most of 14 years due to a rare form of CLL really were painful. I was allowed to watch all but one of his in various clinics around the country and they were so painful he'd be in bed for 2 days after. I learned too late for him that it matters who does them and where. At Mayo JAX for example, you have 2 nurses who each do 7 bone marrow biopsies every work day and it shows. Subsequent biopsies have been as easy as my first, so for me, it
was an reasonable ask to reassure myself that an increase of plasma cells weren't the cause of new symptoms. Two primary cancers were found early in my own body in the past 2 years because of one routine screening and another one scheduled a year early because of a gut feeling one of my Drs and I had about my low ferritin. So I personally am reluctant to dismiss the value of having what has been an easy for me "screening" of my bone marrow for anyone who wants one for peace of mind if nothing else. Nor would I say to you or anyone else that the choice not to have one isn't the right choice for you unless it is only because you think it's going to be painful which doesn't seem to be the case here. Anyone who
is concerned about the possibility of pain should be aware though that they can request light anesthesia if they feel they want or need it.

I'm actually seeing Dr Ailawadhi again this month and plan to ask his opinion about doing another biopsy since it's been 3 years and there are some changes. My involved light chain went off the chart after steadily increasing over the years, I'm having more iron infusions, recurrent infections, and Bence Jones protein popped up in the 24 hour urine for the first time. I have developed neuropathy, am fatigued, and recently, a CT scan for something unrelated shows a healed spontaneous rib fracture that wasn't there last year. And my ANA came back positive though the
associated autoimmune disease markers were negative. The rib could be from a short round of radiation and the ANA could be from previous COVID infection, but taking another look seems prudent since we have learned from the Icelandic study that anyone can progress at any time. For the newly diagnosed, I am excited to see that a new formula was recently revealed at ASH I believe that determines when a baseline biopsy should be performed vs not that appears to be so stunningly accurate, it will likely replace the standard protocol established by the Dr who discovered
and named MGUS, Richard Kyle from Mayo Rochester decades ago. Cancer research moves at lightning speed and the use of liquid biopsies at Dana Farber and elsewhere is also promising as a possible replacement for traditional bone marrow biopsy methodology. I applaud you for taking a deep dive and for seeking
opinions from some of our best researchers. One thing I've learned over the four decades of advising newly diagnosed cancer patients is they need to get to an NCI designated Comprehensive Cancer Center before the first treatment is administered. Data is undeniable - patients who seek counsel at these centers live longer and better. Best of health to you 🙂