In regard to lab results

Hold your info and thoughts to yourself for now and see if the docs "rule it out" (consider it) on their own. You may have the right conclusion, but you don't want to step out of your patient's role.
Instead of making a dx and being wrong, they will use "rule it out," which means they are pretty sure it's that , but don't want to jump in with both feet.

Also, I was so very sure I had a horrible reaction to chemo. It was e. coli food poisoning 😫.

I did more research and found that Lupus could also cause a high M Spike. In a study that I found some patients didn’t have myeloma they tested positive for lupus. I guess I’ll see what the hematologist says on the 25th, he may want to do more testing.

Anemic, random dizzy spells & tired!! for an about 1.5 years. PCP was watching numbers then sent me to a hematologist. I chalked it up to working and too much caffeine.

Diagnosed MM Jan '25 no bone/body pain. 🙏🏻

I'd call the hematologist to have them explain your bloodwork fully to you.

Sending good vibes... one day at a time.

I see him on the 25 of June. I’ve had him as my hematologist for awhile because I have a rare blood disease. I’m just glad I already had him available because I don’t have to look for an oncologist. When I was in my early 20’s they thought I had rheumatoid arthritis but I didn’t.

See sample attached LLS . Good discussion of lab results and protocols with providers..

Sample

Hi Shawn,
Stay calm and don’t make scenarios in your head. Wait for the results and take it day by day. Wishing you the best outcome
Andi 🧚

@baps6194 hello Sean and welcome to the Mayo Clinic Connect. Boy I remember when I had my initial lab work drawn for something totally unrelated and I got a call from my PCP‘s office letting me know that the results were “abnormal.“ I immediately jumped on the Internet. Yikes! I self diagnosed myself into a tizzy. My white count went up, astronomically from stress and anxiety. It actually made me feel sick. I was practically bedridden for a couple of days until I sort of smacked myself in the head and decided to get on with life.
It turns out that I was diagnosed with MGUS. By now, you probably know that that’s a benign precursor to multiple myeloma. Bad part is that you worry about multiple myeloma. Good part is that we have members who have had MGUS for decades and there has been no progression. The risk of progression is very low.
One of the sad realities about our health system in the United States is that you can get test results which you don’t understand and there is no follow up from the physician’s office to talk to you about the next steps. So we do jump on the Internet to do our own research and Dr. Google is a glass half empty kind of source.
Even with multiple myeloma, there have been great gains in the treatment options and the prognosis is much better than it was even 10 years ago.
I agree with Andi that you need to stay calm and carry on, but I might differ a bit in that I encourage you to advocate for yourself. You’re just a few days out from your appointment on the 25th, but always be that squeaky wheel. Call and request an expedited appointment, a phone call with your provider, a phone call with the nurse or the social worker perhaps. There are medical social workers attached to many practices and almost all hospitals and teaching hospitals. It’s amazing what a good medical social worker can arrange.
It’s normal to feel heightened anxiety. The degree to which you find that anxiety debilitates, you should be an indicator of how much you need to notch up your efforts to get information. Sometimes from the initial bloodwork until you get a definitive diagnosis is not immediate. Don’t get discouraged. Make sure that your hem/onc doc is an expert in multiple myeloma. Ask for a referral if he or she is not. You may not have multiple myeloma, but you want someone that treats it every day to get the best possible medical care.
Will you let me know how your appointment goes and what you find out?