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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Do I have a form of myeloma?

by sedickey29 on Wed Sep 07, 2016 1:17 pm

Hi there.

I'm worried I may have a form of myeloma. Several years ago, I started suffering from lower back pain. I was quickly diagnosed with degenerative disk disease. About a year later, I started suffering as well with extreme fatigue and regular episodes of lightheadedness and have lost consciousness several times. I had a lot of blood work done, which for a while was normal. I saw numerous doctors and would be told i was just dehydrated, be given a bag of fluids, and sent home.

Two years ago, during one trip to the ER when i was feeling particularly heinous, bloodwork showed a hemoglobin level of 4. I was given blood and sent to a hematologist who diagnosed me with iron deficiency anemia. I was placed on weekly infusions of iron for a period of 10 weeks. My blood levels did come up and for a short time, the fatigue seemed to subside. Within a few months, though, I started feeling the constant weakness and exhaustion. I also started having the lightheaded feeling again that will hit me at times out of nowhere and is not postural. I began having ventricular and atrial pvc's, chronic low blood pressure, shortness of breath not associated with activity, slight swelling in my lower legs, regular infections, rapidly decaying teeth, general weakness throughout my body, occasional numbness in my legs and hands, and have also been experiencing a noticeable increase in pain in my legs and all throughout my spine that is, at times, so severe it is nearly debilitating and is not at all controlled by ibuprofen.

My most recent set of bloodwork shows my ferritin at a 22, my blood counts all having lowered slightly, but mostly holding at the low end of the normal range. Except for the lymph %, mono %, mchc, and platelets, all which became noticeably higher (now at the upper end of the stated normal range) and an mpv that dropped from a 9.9 to an 8.4 (which is below normal).

I have attached my most recent CMP. I'm tired of feeling so badly, and it seems the doctors are content to leave it at a diagnosis of anemia, though I'm feeling worse and worse. My requests to look further are pretty much ignored. What research I have done has led me here. Any insight, advice, suggestions, or direction would be appreciated. Thank you!

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sedickey29
Name: Sarah

Re: Do I have a form of myeloma?

by Multibilly on Wed Sep 07, 2016 3:01 pm

You really can't tell from just a CMP if you might have a plasma cell disorder such as multiple myeloma or amyloidosis (some of your symptoms remind me more of amyloidosis more than multiple myeloma). But given your neuropathy, anemia, recurrent infections, shortness of breath, fatigue, tooth decay (dry mouth?), low anion gap (not a reliable marker for multiple myeloma, but it does happen in some multiple myeloma patients) and borderline low eGFR, it seems reasonable to me to run the simple and inexpensive tests to screen for a plasma cell disorder. What would argue against most common forms of multiple myeloma is the fact that your serum protein level is not on the high side. But note that there are definitely forms of multiple myeloma where one's serum protein level will remain in the normal range.

I therefore might suggest finding another doctor that would run some of the basic tests for a plasma cell disorder (serum immunofixation, serum protein electrophoresis, quantified immunoglobulins, serum free light chain assay and a 24-hour urine test).

By the way, I've suffered independently from hyopokalemia (low potassium) in the past, which you seem to have. You might want to consider increasing your intake of bananas and raisins to try to boost your potassium level. Low potassium can really have a dramatic impact on a person (I became very disoriented and passed out in a restaurant because of it a few years back).

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Do I have a form of myeloma?

by lys2012 on Thu Sep 08, 2016 7:57 am

What is your actual hemoglobin level? And is your red blood cell count in the normal range or low? Have you looked at possible reasons for you iron deficiency, such as hidden bleeding (like GI sources)?

If I was in your situation, I would really try and figure out the cause of such a low iron level and try and correct that, so it does not keep happening. I would not worry about myeloma as of yet. Your protein number is not elevated, so that is a good thing, and your kidneys looks good.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32


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