[marilynmunster]

New to forum, wondering if I have multiple myeloma

by marilynmunster on Sun Jan 04, 2015 1:23 am

Hi, Everyone.

I am new here and posting for the first time. I have not been diagnosed with multiple myeloma or anything as of yet. I have been reading the Myeloma Beacon for a few months because of some slightly abnormal blood tests I have had, but more because of some suspicious physical symptoms I have been having.

My internist says I have nothing to worry about based on the blood tests and one single urine test (not 24-hour sample), but still the physical symptoms are actually getting worse to the point where I walk with a slightly altered gait. It seems to be a recurring theme here in this forum that a multiple myeloma specialist should be involved in making judgments about tests and symptoms, but I just don't know if my situation even rises to that level. I don't want to waste a doctor's time, and I apologize for taking up the time of readers here, but I can't seem to stop worrying about this, in spite of my primary care doctor minimizing it.

So if you're able to read this and advise me about my results and symptoms, I would very much appreciate it. And like, M. Greenrobin above, I have a lot of faith in the knowledge and experience of this group based on my reading of this forum.

I am a 65 year old female, fairly healthy, never miss work, had uterine cancer 11 years ago, had hysterectomy, and no recurrence of cancer, for which I am very grateful. My current concerns started when I noticed that I was having gluten sensitivity / digestive issues and took myself off of gluten and lactose. This helped a great deal, but not 100%.

My gastroenterologist gave me a blood test to figure out the gluten situation and found that my IgA is below 10 and he advised me that I have selective IgA deficiency and probably have had it all my life.

Based on this, he sent me to a hematologist (not a multiple myelomaspecialist), who gave me additional blood tests, some of which came back slightly abnormal, but the hematologist seemed not interested in discussing these results with me. She seemed unconcerned about the IgA deficiency, but since then I have learned that sometimes multiple myeloma is misdiagnosed as selective IgA deficiency, so that made me worry a little, along with other things.

Because my doctors seemed not interested or maybe just busy, I just started trying to figure it out myself online, came across The Beacon and some other sites, and through these I realized that some of my slightly off blood tests could be caused by myeloma, but more importantly, I seem to have many of the physical symptoms of people whose myeloma is actually active, and not just smoldering.

My worst physical symptom is an ever increasing pain in my right lower back / sacroiliac joint (not sure I'm describing that well). It was initially only when I lay down in bed, especially when I changed position, but has gotten worse and much sharper pain and now does hurt when I walk any distance, sit or stand. (Not anything like sciatica / disc problems which I had about 11 years ago; different type of pain and different part of lower back).

This new pain started about 2 years ago and I thought initially that it could just be arthritis or old people stuff, as I am 65 years old. But now it seems more serious, sharper pain, makes moving around awkward and sometimes difficult.

I also have:

1. Bleeding gums since 2 years ago. Not like gum disease, more like it pours out of my mouth like a faucet when I brush my teeth. (Sorry to be graphic.)
2. Lumps (1 to 2 inches each) three places on the bottom of my ribs, one on left side and two in front, which I can feel under the skin but right on the ribs, which hurt when I press on them. Doctor minimized this, though she said that she did feel a lump. Said she didn't know what it was and dismissed it.
3. 3 severe vertigo episodes in last six months
4. Anemia for a number of years and doctor can't figure out the cause.
5. Extreme fatigue, at times almost debilitating.
6. Severe abdominal pain, both upper and lower, that comes for months at a time, goes, and then comes back for months. Sometimes with nausea and vomiting, but not usually (Wondering if this seems like hypercalcemia?)
7. Chest pain just to right of center of sternum, comes and goes. Doctor ruled out heart. Said it could be inflammation.
8. Shortness of breath when climbing stairs/hills. (This is new in past 2 years, as I'm pretty active in my job and used to walk a lot for exercise. Now walking is not as easy.)
9. In past 2 years developed new type of leg pain (seemed almost vascular but ultrasound ruled out vascular, doctor said) along with restless legs, and new type of very sharp headaches (not migraines which I have had before).
10. Weakness at times, comes and goes, but I do work full time and also have a part time job too.
11. Recurrent sinus infections.
12. Always thirsty.
13. On and off gastro problems/odd kind of constipation.
14. In past 6 weeks have developed new sharp pains on top of right knee cap and on right wrist bones. Knee now getting worse, and makes walking more difficult, but not unbearable. Just makes me kind of limp a little, which I have never done before.

When I mentioned my concerns about myeloma to my internist, she sent me for two tests, SPEP and UPEP. The urine sample was not a 24 hour sample, as I thought it was supposed to be, but just a very small amount of urine. The results she said were "normal" and she's sure I don't have multiple myeloma because these are the "definitive tests", in her words.

I didn't think there was just one or two tests, but that it's more complex than that, requiring judgments based on many tests and observations and other factors. Starting to feel like my doctor hasn't had to make a diagnosis of this sort before, though she's a very nice person and seems very bright.

The abnormal scores on these two tests were:

SPEP

Alpha 1 Globulin (prel) 0.4 High 0.1 - 0.3

The interpretation section said: "Single fraction slightly outside referenced interval. This has no known clinical significance."

Urine PEP

Protein: <4 Low 5-24

I think this shows I have no M-spike? But I have read recently that in some rare cases people have multiple myeloma with no M-spike.

Other blood and urine tests I've had recently:

CBC w auto Diff rflx man diff
(listing abnormal scores only)

HGB 10.9 Low 12.0 - 16
Hematocrit 33.0 Low 34.0 - 47.0
Red Blood Cell Count 3.98 Low 4.20 - 5.40
RDW 15.9 High 11.5 - 14.5

CBC w auto diff No reflx man diff

Lymphocutes instr. 18.9 Low 25.0 - 50.0
Monocytes Abs. 0.70 High 0.20 - 0.60
Platelet Ct. 408 High 150 - 400

Reticulocyte Count 2.1 High 0.5 - 1.5
Ferritin 10.1 Low 20.0 - 288.0
Total I.B.C. 462 High 250 - 400
Transferrin 330 High 192 - 282
Transferrin Satur. 12.3 Low 15.0 - 50.0

Immunoglobulins Serum

IgA <10 Low 82 - 453
IgG 1600 ~High 751 - 1560
IgM 75 46 - 304

Microalbumin, urine, and creatinine were in normal range.

I feel like I should add that, other than the cancer 11 years ago and brief bit of sciatica, I am an extremely healthy person who never gets sick or misses work, and who never complains of physical ailments or imagines symptoms,etc. I am not a hypochondriac, though my doctor is starting to make me feel like she thinks I am imagining this. I just want to figure this out so I can move on.

I'm so sorry to take up so much time and space here. I really do not know what any of these results mean. I am probably fine, and worried over nothing. And I am hoping that someone will look at these results, and read about my physical symptoms, and tell me it does not sound anything like multiple myeloma.

But, if it could be multiple myeloma, I don't want to waste time that I should be using to see the appropriate doctors and start treatment. I live just outside of Boston, so could easily go see a specialist there if one is recommended and if I do need that.

I would appreciate any advice or referral anyone could give me.

Again, sorry to be a nuisance, and thank very much for your time.

[Dr. Ken Shain]

Re: New to forum, wondering if I have multiple myeloma

by Dr. Ken Shain on Mon Jan 05, 2015 12:38 am

I am sorry to hear that you have not been feeling well.

With the decreased IgA, IgA deficiency should be considered. And, although suppression of non-involved immunoglobluins (immunoparesis) is a finding frequently associated with patients with multiple myeloma (active or smoldering), it needs to be associated with an elevated involved paraprotein in most cases.

Multiple myeloma is a rare plasma cell disorder of bone marrow-resident plasma cells. The cancer represents ~ 1percent of all malignancies. The disease is defined by a monoclonal population of plasma cells in the bone marrow and monoclonal production of an antibody (M-spike) or component of that antibody (serum free light chains – SFLCs – either kappa or lambda).

Using serologic and urine screening, we capture a large portion of patients with multiple myeloma spectrum disorders (MGUS, amyloidosis, smoldering multiple myeloma, and multiple myeloma). The population of patients without secretory disease is likely along the lines of ~2 percent, if not less, when using SPEP, UPEP, and SFLC combined. You have had an SPEP that failed to identify a monoclonal paraprotein, which should be comforting. I do agree that a 24-hour urine collection (UPEP) and a serum free light chain analysis would be more appropriate.

In addition to an elevated monoclonal paraprotein, which you do not appear to have, there needs to be multiple myeloma-defining end organ damage (CRAB) or multiple myeloma equivalents (see Rajkumar et al, Lancet Oncology 2014 or the related Beacon article) to define active disease.

CRAB, as we have discussed on the forum before, represents:

- HyperCalcemia,
- Renal (Kidney) Failure / Insufficiency,
- Anemia, and
- Boney lytic lesions,

and these have to be related to multiple myeloma and not some other issues (for example, anemia could be due to iron, folate, or vitamin B12 deficiencies; renal issues could be the result of long-standing diabetes). With the pain you've been experiencing, imaging should been done by now. This would have likely demonstrated lytic bone disease, if present. If you haven't been imaged to date, and the pain is as significant as you state, imaging may be beneficial.

It sounds as though something may be going on, but at this point it would be difficult to blame this on multiple myeloma -- especially over a two year period. IgA deficiency linked to celiac disease is something that should be considered, especially with the chronic GI issues. Furthermore, your mild anemia (Hgb 10.9 g/dL) seems to explained, at least in part, by iron deficiency, which can also be associated with celiac (as can other nutrient deficiencies). I mention the possibility of iron deficiency anemia based on your low ferritin, high TIBC, and high transferrin.

I would suggest that you consider a second opinion from an internist or hematologist / oncologist (not necessarily a multiple myeloma specialist yet) to review your labs and possibly get the complete screening tests for multiple myeloma.

It may take continued investigations by a number of fields of medicine (gastroenterology, rheumatology, immunology, and hematology) to identify the issue or issues.

[marilynmunster]

Re: New to forum, wondering if I have multiple myeloma

by marilynmunster on Mon Jan 05, 2015 7:11 pm

Thank you, Dr. Shain, for your prompt and kind response. I appreciate your explaining everything so clearly.

I do feel comforted that my test results are probably not indicative of a diagnosis of multiple myeloma. I will follow your advice and follow up with other doctors in the various fields, as you suggested.

Thank you for your time and for generously sharing your expertise. And thank you to everyone for allowing me to use your forum to figure some things out. I wish you all the best.

Sincerely, MarilynM.