Does anyone else have MGUS?

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……

Hi Becky, if you go to this site again that @colleenyoung posted, you’ll see a box under the discussion which says, Oldest to Newest. Click on there and you’ll have the option to reverse that to the newest discussions there are some current conversations regarding amyloidosis. The oldest postings were from 2016.

Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what

I still think it was a good idea that you contacted your oncologist. At least you know she has been considering your case and your options for treatment and you gained some more insight as to her concerns for you.
We really never know what curveball life is going to toss our way. I guess it’s our job to either duck, jump, bunt or hit that sucker head on, eh?

Colleen, thanks for the link. I did a lot of reading and realized one sad fact. Like my oncologist already mentioned to me, my birth heart defect is the key to my death. It’s an enigma, it can’t be repaired without being mapped out by the special $25,000 implanted loop heart recorder. Without that information, the procedure to destroy the short circuit causing my heart attacks cannot be performed. With my Amyloidosis hanging in the balance, if they deliberately trigger Pulseless Ventricular Tachycardia to map out the short circuit, that could trigger a major fatal heart attack killing me. So I’m once again between a rock and a hard place. Unfortunately, I’ve been in that spot more than a few times. So thanks for giving me a resource to continue to read. I hope there are more posts closer than 2016 to check out.

Hi Becky,
Here's a good discussion to connect with others talking about amyloidosis
- Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/

Well Lori, I made contact with my Oncologist like you suggested. It was something she said to me from behind me that I didn’t hear correctly because I’m partially deaf in my left ear. Maybe it would have been better had I not contacted her. In what group do you talk about Amyloidosis, the bad kind? Turns out that’s what she’s worrying about because the Amyloids are attacking my heart, brain and kidneys, from the bloodwork over the last 6 months, great huh?
Didn’t you have the same problem? That’s why all my blood results are messed up. She’s mentioned Stem Cells collection, chemo, drugs, but she’s not optimistic I’d make it thru treatment because my heart’s so fragile, she was honest saying that the last time I saw her in person. She’s waiting till I see her in November to collect all the data she needs to decide what treatment because guess what, she’s finally mentioning Lymphoma. She was hooked on MM because of my brother but now she’s waiting to see if it’s hereditary Amyloidosis before she puts a team and plan together. So what do I have to look forward to? Who can I talk to, this sounds scary and lethal for me. Thank you for your advice Lori. Becky

We have something in common. My brother was also sprayed with Agent Orange in the early 60s during training exercises in Washington. He died a few years alter from Hodgkin’s Lymphoma. Agent Orange is, unfortunately, associated with many types of blood cancers. I’m sorry for your loss too. 😢

There’s one part of the equation you don't know. My brother died from MM because he was exposed to Agent Orange in Vietnam. What cancer is linked to Agent Orange, you guessed it, MM.

For me, I was exposed and ate tainted vegetables that were by a weed killer too. I unknowingly sprayed the weed killer close to but not on the plants. So for 32 years, my body absorbed Roundup weed killer. Guess what cancer is linked to the weed killer that people died or got from it, Lymphoma. I’m betting my life on it, that I have it and not MM but everything my Oncologist gives me says nothing’s found. I just went thru a full body X-ray survey, 26 X-rays looking for MM lesions, none found. Guess what, Lymphoma doesn’t usually show up on X-rays. That’s why I’m glowing in the dark from so much radiation. Oh well. Thanks for your advice and concern about me. I guess it’s the wait and see game again.

Thanks and yes I will do

That’s the problem exactly, I personally sent a text message after reading the results of a CT Scan in late June 2022. I asked my Oncologist, Neurologist and PCP the same questions. All three were involved with my treatment, blood, brain and body. All were in agreement for what was to happen next and all three knew the others were involved. Not a word out of all three of them, not an “if, and or but”. The conclusion to the CT results was simple, yes or no. I didn’t need an explanation, I already knew the answer but the three of them didn’t have the guys to tell me, so they never answered me at all.

My sister Beverly faced her death as she prepared to die and so will I. She died from a rare brain tumor “Antiplastic Astrocytoma” at the age of 39. She was my heart and soul, my confident all her life. The night before she died, I held her in my arms as we cried. She said they’re waiting for me as she pointed out the window. Who I asked, as she pointed out the window. The Angels, she said. She died 8:25 am February 10th 1989. before my mom and I could get there.

The past haunts me as my daddy died when I was just 7yo. That tragic event will unfold this Saturday August 20th, 72 years later, his death is seared into my brain. I have to stop, this is not a good place to be. That’s why 2 weeks ago I purchased my own headstone and my ashes will be buried between my mom and sister so that we can be a family again. Please don’t answer,, I’m crying, naturally.

Hi @brit1959 I’m glad you found the information helpful. It’s always scary when we get a diagnosis of something completely new to us.
Your trip to the hematologist will be helpful I think. He/she will be able to reassure you and give you some more direct answers. If you don’t mind let me know what you find out, ok?