Does anyone else have MGUS?

I wish I could Lori but my upbringing and ancestors mistrust medical professionals. You see, my maternal grandfather was Native American who also did not trust White man’s doctors. It was his advice to my mother when she was young that saved my life as that 6 month old baby, that White man’s doctors said I was dying and nothing could be done to save me. Know what “dirty water” means to me, it’s what I drowned in when I was 5yo when and my heart stopped. Subconsciously, every time I pass by dirty water, my blood pressure skyrockets to this day. It took 2 years of monthly sessions with my psychologist to figure that one out.

Why do I not trust doctors or medical professionals, simple, 14 doctors from 4 different departments almost killed me. How you ask, I had level 9 chest pain that not a one of those doctors knew what could be wrong. They thought of every diagnosis except the correct one. For 45 days, that chest pain hit as many as 4 times a day, so badly I ended up on the floor in agony. When my blood pressure shot up to 211/113, they forgot about the chest pain and tried to bring it down.

Nothing worked, the lowest they got it was 209/101 and that’s how high it was when they discharged me with this diagnosis “Chest Pain of Unknown Origin!” By the time a stress test was done on me after 45 days or torture, they finally discovered the cause of the pain, 3 blocked holes in my heart. Within 25 minutes I was on an operating table and 4 hours later, I had my 1st heart attack in Cardiac Recovery. And you wonder why I won’t go to doctors unless I can trust, them and I’ve lost faith in my Oncologist and others. I’m a fighter all right, my grandfather gave me that ability because he survived the 1918 Pandemic at age 52 with 9 children, my mother was born in 1920. Thank you for your advice but what I was looking for was symptoms you experienced while your condition was presenting to you. Take care.

Sadly I’ve lost faith in my Oncologist. She seems to be so focused on me having MM because my brother died from it, she excludes symptoms I have that focuses on Lymphoma. I’ve been misdiagnosed to many times because doctors use their textbook knowledge to mislead their diagnosis. My last PCP fell into that trap and wanted me to have a procedure that wasn’t needed. I guess I’ll fall back on my old reliable, playing Russian Roulette with my body. I’ll just wait till whatever happens, happens. If I lose, I’ll be dead. “C’est La Vie”! Take care.

Our past can certainly shape our futures but we also can’t dwell on them and need to continually move forward. So for whatever your forefathers went through, though it left an indelible imprint in your thought processes for the future, it doesn’t necessarily mean you’re going to have the same outcome.
I feel badly for you that you’ve had some unusual negative experiences in the medical field. I think most of us have some war stories we’d like to forget. I have a few of my own but I didn’t let that stop me from getting the help I needed.

If you’re having newly worsening symptoms, there is no recourse but to seek medical attention. Try to put that mis-trust aside and approach this from a perspective that your doctor is trying to help you, not to lead you down a path of misdiagnosis. Over your 78 years, medicine has a changed a great deal, especially in the field of blood cancers.

You’re seeking advice on what symptoms to look for if you have blood cancer? Well, honestly, Becky, you’ve named quite a few. So I don’t know what else I can tell you except to simply call the clinic and get in sooner for blood work.

What I experienced with my blood cancer story won’t be the same for yours. But certainly 8 level pain in your ribs which can be indicative of MM, bleeding in urination, bleeding excessively from a small cut, exhaustion, Kidney’s aching, having abnormal bloodwork from past results in April, all point to getting more bloodwork done sooner than your next appointment in September.
Start fresh by looking forward. Don’t keep delving into the past and the bag of what-ifs or what should have been done or what was done. You’re at a large teaching hospital. This is where good medicine can happen. But if they don’t know you’re having worsening symptoms, they can’t help you.
So please, set your mistrust aside and call to see about getting an appointment for bloodwork.

Hi Becky, your oncologist would be in the better position to diagnose your possible blood cancer. There might be a reason she’s leaning towards MM even though you feel you have a lymphatic disease. Bone pain, back pain, low blood RBC/WBC and platelets being some of the primary symptoms with MM and not lymphoma.

With all your research you’ve possibly been on this website that discusses the differences between MM and Lymphomas but I think you might find it interesting or worth a second look.

https://www.medicalnewstoday.com/articles/multiple-myeloma-vs-lymphoma#comparison-table
With your current symptoms, your doctor may have some merit in her leanings…
I’m relentless in my positivity and encouragement because I’ve been on the ‘holding on by one toenail’ point in my life a couple of times. It’s imperative to take charge and keep moving forward. So whatever beef you have with your doctor, set it aside for now and maybe give her the benefit of the doubt and get the bloodwork done.
If you want to play roulette, that’s fine but I think that’s cavalier considering you’re asking for help finding a diagnosis. It shows me you’re not quite ready to do that. ☺️
What do you think? Are you with me on this? Will you call your doctor please?

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?

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.

Thanks and yes I will do

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.

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. 😢

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