Does anyone else have MGUS?

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/

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, 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?

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……

November? I don’t understand why you should have to wait until November until she collects the data to make a definitive decision about treatment.

It’s a long story but I was born with. 1 in a million heart birth defect. It’s because of the defect that causes difficulties scheduling any decisions for a procedure or taking any medications. My PCP, Neurologist and Oncologist were worried about severe pain in my entire brain. Since my 39yo sister died from a rare brain tumor, all three doctors agreed, they needed MRI’s done. Sounds simple right? Not with a $25,000 loop recorder under my left breast that could be ripped out of my chest by the machine. Hold on the hospital says, we need special instructions from the manufacturer, From there it went downhill in a hurry. Lets just say, it took almost 2 months to get all the paperwork done, all the T’s crossed, all the I’s dotted. Then came the scheduling, oh no, another month goes by, people are switching time slots just to fit me in.

The night before the procedure, they’re calling me to make sure I’m coming, yes I replied. One major problem, the day before, I was sitting next to a friend for two hours talking. I wear a good quality mask since I have an almost nonexistent immune system, my friend did not have one on. The morning of the tests, I wake up with a fever of 102.7 at 4am. Not knowing what I had, at 6am I canceled multiple appointments.

To your question, I have a special heart problem that 4 doctors must agree on any procedure or treatment can occur, my Oncologist is one of them. With my heart defect being so rare, 1 in a million, they want to keep me alive to do the procedure to repair it. Since any treatment my Oncologist could try on me could kill me because of the defect. It took almost 3 months just to get an MRI scheduled, imagine being only 1 of only roughly 350 people in the whole United States with this defect. Nothing is going in or out of this body without all 4 doctors in agreement. At present, a geneticist is being added to the list soon. Oh well, such is life!!!

Lori, switched the loading sequence but that caused a problem. It talks about AL Amyloidosis but I forgot the definition of AL. I Googled it and that only created more confusion. Since I have multiple family members (4) besides me, that died from mysterious heart issues, I was led to think I might have the hATTA-CM Amyloidosis which is the Hereditary Amyloidosis.

Then that’s when I Googled the meaning of the AL. Now I’m really confused because of what it means and what’s wrong with my blood. AL means light chain Amyloidosis. I know what you’re going to say, ask your Oncologist, but I don’t want to bother her anymore unless it’s extremely important. I don’t even know how to explain this to you without confusing you too. I assume you know I have MGUS that is classified as being precancerous and is progressing into cancer. Here’s the Enigma, AL means the Amyloidosis is light chain. My official classification of my MGUS is “Kappa light chain IgM”. See the same two words in both of them, Is that just a coincidence or is that a clue to my Amyloidosis being AL and/or hATTR-CM. If the guess or answer is out of your knowledge, I’ll understand. Thanks for being there for me!!!

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.

Hi, I just joined and saw your post about Evusheld. I was just diagnosed with MGUS last year and my hematologist just recommended the Evusheld yesterday. I have not taken Covid vaccine previously. Just want to ask if you ever had a reaction to it? I’m 68 and a bit nervous about vaccines.

Dear MGUS Newbie,
Welcome! I’ve had MGUS since age 75. I’m now 82, hypertensive, have metabolic syndrome obesity, use an APap for sleep apnea, have NAFLD (non-alcoholic fatty liver disease) Hashimoto’s hypothyroidism and probably other things I don’t even know about. Deciding to take covid vaccines was easy for me. Considering my risks, I need to protect myself in the best ways possible!

Since I watch ethical major news networks (and absolutely never watch Fox or OAN,) I don’t do social networking at all, so certainly would never rely on them for factual information. I keep informed by experts interviewed on factual news channels. The experts, namely physicians and epidemiologists, have said this is an “epidemic of the unvaccinated.” They said that before omicron and its variants. I tend to believe their helpful commentary.

We can learn from them.

A variety of covid vaccines are being used around the world. If they weren’t saving lives they would not be so popular. I chose to use Moderna and had both first two innoculations, as prescribed, (Very slight side effects. I thought I felt lethargic but might have been imagining that.) Also had both half-dose boosters. Even though I had the post-omicron dosage amounts of Evusheld, (with absolutely no side effects) I will plan to get the bi-valent (two covid virus strains) of Moderna shots when they come out. And, like every year, I will get my flu shot, seeking a pharmacy which carries Sanofi quadrivalent fluzone, being certain to get the senior, larger dose amount. It is many years since I’ve had the flu, so I believe those flu shots helped. My question will be which month to get it this year, so I’ll email my wonderful PCP to ask the timing he advises.

It is difficult to understand vaccine hesitancy. An in-law cousin’s brother was born with autism and she blames innoculations. Recent knowledge has come from doing imaging on 6 month old baby brains. Autism differences were noted even then, at that early time before they get any shots.

Innoculations are tools which help keep us well. I plan to always stay up to date with mine.

Suggest you look within and ask yourself why you are hesitant. Then ask whether your current belief is helpful to you. Here’s a quote from my grandmother; “I keep my mind clean by changing it often.”

Suggest get courageous and face the needle. Well, not quite. It will be your other end which receives a pair of needles! Wishing you all the best!