Waiting on Multiple Myeloma testing

Hi @jenga543, welcome to Connect.

Thank you for taking some time to share some information about your friend and wondering about how long it takes for a multiple myeloma diagnosis.

I would like to invite @beckyoutlaw1115, @jan52241, @sheilasfight, @missouri, @mrsdoc, @mehz4802, @scmsable, @user_ch3a1e07f, @mamaellie, @totopeg, and @larryfairtax to this conversation as they have all discussed having, or caring for someone, multiple myeloma and may be able to share a bit about their experience of being tested and diagnosed.

@jenga543, If you don't mind sharing, how has your friend responded to the prednisone and gabapentin? The waiting period for any diagnosis can be difficult, how are both of you doing?

Thank you so much. There is no relief or change with the prednisone and gabapentin. Initially, he did feel some relief with the original prednisone rx, but has not gotten any relief with the 2nd round. He continues in pain and I believe he has fallen several times, but he won't admit that to me. He is NOT currently affiliated with Mayo, but we are looking into that, as his current doctor is not returning his calls regarding his test results and pain level. Quite frustrating. The hip pain is the most concerning complaint, as he has great difficulty walking. He has 4 phone calls into his doctor's office. I was just trying to find out an idea of how long before the test results become available. It's not a lot to go on, I was just getting frustrated and trying to reach out. Thank you for your time.

After 5 phone calls, we have learned that the test results are negative for multiple myeloma. We will be pursuing other resources (medical providers) to determine the cause of the pain. Thank you.

I had blood tests and some values were not within normal limits. Waiting for a bone marrow biopsy to see if I have MM.
Has anyone been through this routine? What treatment have you received? I would be grateful for any info.

Welcome to Connect, @helchen. You'll notice that I moved your message to this discussion about waiting for results of testing for multiple myeloma. I didn't this so you can connect with others, like @jenga543. As well as members who have been diagnosed with MM, like @1nan, @spooner2 @yield2 @beckyoutlaw1115, @ozys, @jeanroberts, @stephanieprieto, and @lisa54. They may be able to share some of their experiences with the diagnosis process and what they will be facing next.

Helchen, while you wait for others to reply, you may wish to read these discussions on Connect:
- Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-1/
- Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

When will you have the bone marrow biopsy?

@colleenyoung @helchen I have had the testing, including bone marrow biopsy, MRIs and CAT scans. The diagnosis is MGUS [monoclonal gammopathy of unspecified significance], the precursor to MM. I just had labs done and go to hematologist oncologist on the 7th of Jan for the monitoring update. My autoimmune disorders are numerous. I hope you have good news. When you get the biopsy, ask them for the Versed, to take the edge off your anxiety for the biopsy. They didn't give it to me, and the procedure was pretty uncomfortable.
Ginger

Thank you for replying to my post. I am waiting for an appointment with radiologist to do bone marrow biopsy. I am so nervous and cry all the time. I lost my husband a while back and have been upset ever since, and now this. My PTH level is very high as well. I read someplace that that has something to do withMM.
My m spike is elevated and my blood count is low. I am so concerned as I am all alone, not much support. Not sure how I am going to manage.
As soon as I find out more after testing I will post again. The waiting is unbearable. Helchen

I am sorry you have to go through this alone, this site and group is there to help and listen. Four years ago my blood work from my primary care doc was really low. WBC, Platelets, neutrophils etc. Scared me to death! She sent me to Mayo. Blood work was still the same and I had a bone marrow biopsy. By the way, take the versed as suggested. Then another one. The findings were nothing was wrong. Relief yes, but no too. What is causing all this to happen. My hematologist still cannot pinpoint why, we look every 3 to 4 months, blood work fluctuates but never crashes. So, hang in there. One other mistake I made and that was using Google to research this. That caused me terrible anxiety. Listen to the docs. and regardless what anyone says Google is NOT your friend :-).

@tbone45

I am so glad to hear from you. I know I am not alone, but I just can not stop crying. I did not have any symptoms until 3 days ago when oncologist mentioned MM. I am just worried and every little hurt is magnified now. Wondering if that is normal.
I am devastated, the news came so out of the blue
Are you tired all the time and have pain?
What concerns my Dr. is the high M spike.
I am being so depressed.
Is Versed a pill one takes shortly before procedure?
Thanks so much for replying to my
Post.
Helchen