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jenga543
@jenga543

Posts: 3
Joined: Oct 22, 2017

Waiting on Multiple Myeloma testing

Posted by @jenga543, Oct 22, 2017

5 months of varying, increasing symptoms (weight loss 25 pounds in 2 months, decreased appetite, tired, difficulty sleeping, headaches on back of right side migrating to right eye with blurred vision (blurred vision has ceased, but still 2 headaches per day, difficulty grasping/writing, severe hip pain (biggest complaint), difficulty walking, all has led to different tests, all negative (CT scan, bloodwork). Whole body bone imaging shows “subtle altered marrow changes noted in the proximal femora bilaterally…no abnormal uptake identified within hip joints”
Doctor now suspects multiple myeloma and tested 6 days ago (blood and urine). On hydrocodone for pre-existing sciatica, doctor prescribed prednisone and gabapentin but there has been no relief for the hip pain. 50 year old white male. Increasing the hydrocodone hasn’t provided relief. How long do these test results take to determine if multiple myeloma is the diagnosis? And does any of this sound familiar?

REPLY

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?

@JustinMcClanahan

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?

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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

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?

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@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

@gingerw

@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

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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

@helchen

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

Jump to this post

Hi @helchen,

Versed is one of several brand names of the drug midazolam, which is given before and during surgeries and some medical procedures to induce drowsiness, relieve anxiety. It’s available as a syrup or as an injection, and is given only by or under the direct supervision of your doctor. Here’s some more information: https://www.mayoclinic.org/drugs-supplements/midazolam-injection-route/description/drg-20064813

@helchen

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

Jump to this post

@helchen Yes, I am tired a lot of the time, but there are other factors that may be contributing to that. I am anxious to review the latest bloodwork results to see if there is any change to be concerned with. Right now I have only partial returns. Do you have family or friends nearby that you can reach out to? You know the saying about friends: "they double the joy, and halve the grief and worry". You will need a driver for the biopsy if you get Versed. We care, and hope you will keep in touch with us.
Ginger

Ginger, thanks for responding. Yes, I do have some friends, but no family at all,,,,,, I am not a person who asks for help,,,,,, probably not a good idea at this time. If only I could get tests done as quickly as possible that would be a help. But it seems everything takes such a long time. The waiting is nerve racking. I will keep in touch.

Liked by gingerw

@helchen

Ginger, thanks for responding. Yes, I do have some friends, but no family at all,,,,,, I am not a person who asks for help,,,,,, probably not a good idea at this time. If only I could get tests done as quickly as possible that would be a help. But it seems everything takes such a long time. The waiting is nerve racking. I will keep in touch.

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@helchen Yes, I was also so reluctant to ask a friend to help me out. By the time it was done, I was made to feel guilty for interrupting her day. Last time that happened. But there are people who will pick you up literally and figuratively. Waiting can be hard, you're right. Think of it that the wait is worth having a correct diagnosis. Helps the time to seem not so bad.
Ginger

@helchen

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.

Jump to this post

Helchen, I hope you can first recognize your testing as positive opportunity with caring professionals. Second, you will have options available to you when answers come. I was diagnosed with MGUS in 2002, and then Multiple Myeloma at Mayo Clinic in 2004. There has been so much progress in treatment options since then, it truly feels like managing a chronic disease. My mantra has always been, "Be smart, not scared". No matter your outcomes, remind yourself that you are empowered to steer this ship. I wish you the best. Nancy

Liked by gingerw

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