Multiple Myeloma: Come introduce yourself and let's talk

John,

I've been conducting research since my initial diagnosis in early November. I bring as baggage into the treatment process three childhood bouts of GBS which left me partially handicapped, so any treatment that causes potential nerve damage gives me pause, and several of the treatments for MM seem to cause nerve damage, but I haven't found a clear description of what exactly "cause nerve damage" means in this context. I realize this may be a "pick your poison" process, but I want as much clear info as possible before I do my picking. I meet with an MM specialist Jan. 5.

Hello @tristram, Welcome to Connect. I saw your post in the GBS (Guillain-Barre Syndrome) discussion and I thought I would respond here in the Multiple Myeloma: Come introduce yourself and let's talk:
https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/ so that you could meet other members with Multiple Myeloma and learn what they have shared.

Here's some information I found that includes treatments and meds given for multiple myeloma and their side effects.
-- Patient education: Multiple myeloma treatment (Beyond the Basics)
https://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics
Have you done any research on the treatments available?

I recently had more blood work done including Basic Metabolic Panel, CBC, Ionized Calcium and Serum Protein. Everything was normal except for the ionized calcium which was 1/2 mg above the normal range. My regular calcium was within the normal range, but on the high end. My main symptoms are muscle pain, sometimes severe, and insomnia that started 5 days after I got Covid in late January 2022. The muscle pain was bad for 2 months after Covid, then got a lot better until a few weeks ago when it started again. I am wondering if I either have Long Covid or Fibromyalgia, which Drs haven't diagnosed because there's no definitive tests for those conditions, or my symptoms could be related to my poor sleep. Thank you for your concern and advice.

@ripley If possible, get a referral to a hematologist for full testing. As you might know, multiple myeloma starts out in lesser stages of MGUS and Smoldering Multiple Myeloma [SMM]. Based on test results, they might do a bone marrow biopsy, or adopt a wait-and-see approach with repeat testing every six months or so. Having family members with MM already, you should be making sure your medical team is aware of that, and that gives you added incentive to be mindful.

I indeed had symptoms similar to you, but it was due to other health issues. Chronic kidney disease and fibromyalgia had a lot to do with some of my symptoms being called out for one condition, that in reality was something else. Funny how the body is like that.

Will you check into getting to a hematologist and let me know what you find out?
Ginger

Recent blood work showed slightly elevated ionized calcium levels. Regular calcium levels are at the high end of normal. My blood count levels are normal, including creatinine, albumin. For almost a year I've had insomnia, low energy, muscle aches, generally feeling unwell. I know high calcium levels can be an indicator of multiple myeloma, and it's a concern for me because my father and his mother both had MM. Just wondering if anyone had early symptoms similar to mine before being diagnosed with MM? I have a Dr appt today but my Dr seems unsure about my blood work since, other than slightly high calcium levels, my other blood work is in the normal range.

What sparked your doctors to do the bone marrow biopsy. I have abnormal red cells and feel like they should do a bone marrow biopsy, but, they don't seem concerned. It's frustrating.

@lisal64 One problem I have is lazy doctors. These are people who don't know anything about your particular disease and are too lazy to look for the proper testing and treatment. A doctor who is not incredibly curious about the human body should be summarily dismissed from medical practice of any kind. Yours is a very typical case, showing dental issues the doc does not easily recognize. And then you add the fact that you have only a few billion variants to your bucket, and every one of them can, at any time, be part of a problem and shape your life, a lazy doctor is not worth having around. Part of my dental problem is that my mouth upper and lower palate seem to keep trying to erupt new teeth in my jaw. Little bumps keep forming just a short distance from my roots., grow out about 1/16 inch, then fade away after a few years. And all my teeth hurt all the time unless I use Orajel or some brand of sensitive teeth toothpast with painkiller. And my heart ejection fraction, at one time tested at less than 30, is now at 70 because the thickening walls and valves have shrunk the available space for blood to collect for the next pump action. My son's EF is doing the same thing, but much worse. His EF is >70, and has been in the low 20s. Yes, we that that incurable cancer known as myeloma >Amyloidosis>Gelsolin. I also have a gene which attempts to establish polytactyly, (extra fingers, nails, and teeth). I am trying to hitch a ride to Spokane to see the Amy specialists there, but it is not easy because my doc is incredibly lazy and jealous of the way I spend my medicare. oldkarl

Thank you so much for sharing! My dental issues are the reason I still refuse bone strengtheners. I have had no fractures, so far, and take Caltrate now. Of course, lytic lesions are amyloid, I guess. But I always felt like the deep dental cleaning spurred a systemic inflammatory response. And you are right. Since diagnosis, my doctors don't seem interested in checking out any other problems. They make me feel like a lost cause, because I have an incurable cancer. It is frustrating.

Don't miss this free online webinar for patients hosted by Mayo Clinic tomorrow, Jan 8, 2022. Learn more here:
- Myeloma and You: A Day for Patients and Caregivers Webinar https://connect.mayoclinic.org/event/myeloma-and-you-a-day-for-patients-and-caregivers-webinar/

On Revlimid only. Kidneys were already not so good when I was Dx because of diabetes. My GFR is 30 and staying the same.