[Jashem1980]

Not sure of my diagnosis - what should I do next?

by Jashem1980 on Tue Feb 10, 2015 2:17 pm

Hi All,

First time poster here.

I have been dealing with a mix of a bunch of different symptoms over the past couple months and my doctors have been unable to figure out what's causing them.

The biggest symptom has been bone pain across various parts of my body. Up until the past few months, I had been a healthy 34 year old male. My doctor had suspected multiple myeloma and ran a SPEP test, which didn't show any elevated M proteins. Because of this result, he totally ruled out multiple myeloma. I have done some reading and realized only 70 to 80% of people will show elevated M proteins if they have multiple myeloma. I have had almost every possible blood test over the past 2 months (CBC, Lyme, thyroid, C reactive protein, ESR, etc). Also had some X rays runs. Kidney functioning was normal on blood tests.

Only Abnormal tests were:

• (Urine tested positive for a tiny amount of blood)
• B12 + albumin levels were both slightly above the top end of the range
• Chest X Ray showed very slight calcification on top of 1 of my ribs -- radiologist's first response was if I was tested for tuberculosis (I was recently tested - negative)

In terms of next steps to try and rule out multiple myeloma, should I ask the doc to run a Freelite blood test or a urine electrophoresis to test for Bence Jones proteins?

Again, my doc said he ruled out multiple myeloma because of just the 1 normal SPEP and combining that with the other tests.

Should I also ask for an MRI or PET scan because of the bone pain? (X rays showed nothing except for the chest X-ray I noted above). Bone pains have been in my back/spine, arms, lower legs). I know X rays aren't always sensitive enough to pick up on bone lesions, or could the pain be caused by the the increasing amounts / activity of plasma cells within the bone marrow itself?

I have also noticed I have been urinating a ton over the past few weeks.

I wasn't sure what other details of symptoms or tests you guys might want but happy to provide based on any additional questions.

I am lucky enough to live in Boston and have access to some of the best docs / hospitals in the country within a mile from my house.

Just looking for some help to test for / rule out multiple myeloma.

Jason

[lys2012]

Re: Not sure of my diagnosis - what should I do next?

by lys2012 on Tue Feb 10, 2015 9:43 pm

Can I ask what symptoms led your doctor to suspect multiple myeloma?

Do you have any "CRAB" symptoms?

C - Elevated calcium
R - Renal/Kidney
A - Anemia (low blood counts)
B - Bone lesions or osteoporosis.

I think asking for a urine protein test would be a logical request, since most of us have this as part of our diagnosis. The Freelite test is newer. I'm not sure if it is a specialized test or if GP can order it (I get my follow up at the cancer centre).

The bone pain you describe in the arms and legs isn't in the typical spot for myeloma activity (no active marrow in the smaller bones), but back pain is something many deal with. For me, the back pain was identifiable in the vertebrate, not muscular; very pinpointed pain to where the lesions were. The bone survey is a pretty standard myeloma test (MRI is not really part of initial workup for myeloma where I live).

You are pretty young for myeloma, but I know it happens in young people. I was 32 when I was diagnosed. And it took a long time for me to get a diagnosis partly due to my age.

[jashem1980]

Re: Not sure of my diagnosis - what should I do next?

by jashem1980 on Tue Feb 10, 2015 10:50 pm

Hi Lys,

My doctor thought of running the original SPEP to rule out multiple myeloma because of the bone pain. He was running out of other things it could be, so he thought maybe multiple myeloma. He even referred me to a rheumatologist to rule out arthritis or fibromyalgia. He figured no M proteins on the SPEP, so it couldn't be multiple myeloma, but that's where my reading said otherwise. So I need to convince him to run the extra tests.

In terms of crab symptoms, calcium level was in the normal range each of the last 2 times it was run in late December and early January. I noticed I am peeing a ton the last few weeks, so maybe the broken down bones are causing the calcium to get into my blood? Kidney blood and urine tests have been normal. X rays in late December showed no lesions. They ran them on my tailbone and lower spine area, as I was having pain there. Also ran 1 on my legs. Blood tests showed no anemia. CBC amounts were all in the middle of the normal range.

Thoughts?

Is it possible the SPEP missed the M proteins because it was too early for them to rise, or maybe they were too low to find? Or maybe I am only a light chain person or even a complete non secretor?

In terms of the bone pain, is it possible to have it in the arms (tricep and forearms, even hand fingers) and lower legs (shin and ankle area)? I have the spine pain, mostly lower part, hip pain, tailbone pain, and rib involvement.

Where do I go from here?

[Multibilly]

Re: Not sure of my diagnosis - what should I do next?

by Multibilly on Tue Feb 10, 2015 11:17 pm

Lys - Any doc can order a serum Freelite (free light chain) assay (sFLC) test. You could also just walk into any lab and have the test done, but you would pay the non-insurance rate if you did so without a prescription. I'm not a doc, but I just think sFLCs are easier to do than a 24 UPEP - and it's a lot easier to interpret the results of an sFLC.

Jashem - You are right that an SPEP is only useful for about 80% of patients. About 20% of multiple myeloma patients only present with light chains (which would be detected by a Freelite assay test). I think the negotiated rate that my insurance company pays for any one of these tests is less than $20 and then you probably only pay a fraction of that negotiated price (at least in the USA with insurance).

Did your rheumatologist look for any form of lupus?

[jashem1980]

Re: Not sure of my diagnosis - what should I do next?

by jashem1980 on Wed Feb 11, 2015 10:24 am

Lys,

Is it possible for the Freelite test to miss something that the 24-hour urine would have picked up on? From what I have read, the Freelite test has pretty much replaced the need for the 24-hour urine test and the combo of the SPEP and Freelite will pick up on any myeloma case assuming the person isn't a true non secretor?

In terms of the bone pain, I have found a few cases online where people had lesions on their lower leg or arm bones (although very infrequent).

MultiBilly,

I did have my ANA (antinuclear antigen) test to rule out lupus (was negative). I have read that that particular test is only 97% accurate, though.

Thoughts from both of you?

[Multibilly]

Re: Not sure of my diagnosis - what should I do next?

by Multibilly on Wed Feb 11, 2015 11:12 am

Jashem,

I think you might get differing opinions on whether a 24 hour UPEP is necessary if you are also running an SPEP and a SFLC.

While my local onc doesn't use 24-hour UPEPs and doesn't really see the value in them, other doctors do place value on them. I believe the IMWG also still recommends a 24 hour UPEP for various reasons. See this thread for one doc's rationale for using the 24 hour UPEP.

"24 hour UPEP and free light chain (FLC) half life," forum disc. started Jul 8, 2014.

But rather than try to debate which lab test to choose, why not just do both or just get the standard battery of multiple myeloma lab tests? The only hassle with a 24 hr UPEP is you have to collect your pee for 24 hours. But it's really not that big of a deal.

I really can't imagine that your doc would be challenging you about getting these simple, inexpensive tests done. BTW, if he/she would rule our multiple myeloma based on an SPEP alone, you might want to consider finding a hematologist/oncologist that specializes in multiple myeloma. The standard multiple myeloma lab tests are listed below (sounds like you've already have a number of these done already).

1. Complete blood count (CBC) gives information about the presence or absence of anemia, and/or low white cell count, and/or low platelet count.
    
2. Chemistry / Metabolic Panel provides the blood calcium level; serum creatinine as a measure of kidney function; and liver function test results.
    
3. Serum Protein Electrophoresis (SPEP) assesses the amount of abnormal (monoclonal) protein.
    
4. Urine Protein Electrophoresis (UPEP) shows the amount of monoclonal protein in the urine. Patients must collect urine for 24 hours and it is then sent to the lab for UPEP. Only monoclonal light chains, not heavy chains, are found in urine. Approximately 30% of patients have light chain protein in their urine as well as heavy and light chains in the blood. Approximately 10% of patients have myeloma cells that produce only light chains and no heavy chains.
    
5. Immunofixation (IFE) provides information as to the presence or absence of a monoclonal protein as well as the type of myeloma protein; i.e., heavy chain (G, A, D, or E); and/or light chain (kappa or lambda).
    
6. Quantitative Immunoglobulins shows the total amount of IgG, IgA, and IgM, both normal and abnormal (spike).
    
7. Freelite® test (serum free light chain assay, SFLC) is used to measure the number of free kappa or free lambda light chains (fragments of the monoclonal protein) if it is not possible to quantify heavy chains with serum protein electrophoresis, or light chains with urine protein electrophoresis. Some patients’ myeloma cells secrete very little or no monoclonal protein that can be detected with SPEP or UPEP; the majority of these patients can be tested adequately with the serum free light chain assay.
    
8. Routine urinalysis can show the presence of protein and/or may indicate evidence of kidney damage or infection.
    
9. Urine Immunofixation (urine IFE), as for IFE in the serum, indicates both the presence or absence as well as the type of monoclonal protein.

[Jashem1980]

Re: Not sure of my diagnosis - what should I do next?

by Jashem1980 on Wed Feb 11, 2015 12:17 pm

Hi Multibilly,

I will ask my doc to run both the 24-hour urine and free light chain test when I go back in 2 weeks for my follow-up visit to cover all my bases.

In terms of seeing a specialist, I have actually tried to get a referral within my current hospital / doctor's practice I have been going to for the past 2 months. They won't see me until my regular doc gives them some sort of initial diagnosis that they can start digging more into (a bit frustrating).

Also, I called up Dana Farber (top 4 or 5 cancer hospitals in the country) and had my regular doc from Tufts Medical Center send all my recent tests to them. Dana Farber said my tests all seem fine so they see no reason for me to come in and see a hematologist-oncologist over there (they have a large myeloma center).

It's frustrating because I know something is seriously wrong with me, but no tests have shown anything yet that would make them think something is seriously wrong with me, so I can't get the referrals to see the blood cancer specialists.

Honestly, I am not sure if I want the next round of tests to show myeloma or not. I really want to know what's wrong with me (and they have ruled everything else out), but I obviously don't want to have an incurable cancer either.

Jason

[Multibilly]

Re: Not sure of my diagnosis - what should I do next?

by Multibilly on Wed Feb 11, 2015 12:59 pm

This is indeed a tough situation. Chances are you don't have multiple myeloma, but it would be good to rule it out definitively. Are you absolutely tied by insurance to your current GP and institution, or will your insurance allow you to pick a different GP/institution?

I had a serious foot issue a few years back and got 4 different misdiagnoses before I found a brilliant doc that nailed the correct diagnosis and rqd treatment in less than 2 minutes (really). For me, it really paid to keep trying different doctors. But I was also fortunate enough that my insurance doesn't require a referral to see a specialist.

[Cheryl G]

Re: Not sure of my diagnosis - what should I do next?

by Cheryl G on Wed Feb 11, 2015 1:13 pm

Hi Jason,

I don't have any ideas for your right now beyond the advice you've already gotten from Multibilly. I did want to mention, however, that there is a myeloma specialist at Tufts who you could consult with, in case you want to. He is Dr. Raymond Comenzo:

https://www.tuftsmedicalcenter.org/PhysicianDirectory/Raymond-Comenzo.aspx?dpt=11d55215-6673-49cf-93c9-ebed87cf6149

Of course, Dana Farber has an excellent group of myeloma specialists, but, if it's easiest for you to stay within the Tufts system, Dr. Comenzo should be a perfectly reasonable doctor to see.

[Jashem1980]

Re: Not sure of my diagnosis - what should I do next?

by Jashem1980 on Wed Feb 11, 2015 2:33 pm

Multibilly,

My insurance is PPO so I can basically see any GP I want assuming they are in-network with Aetna (which is most thankfully). I am going to play out my next visit in 2 weeks and ask for the Freelite test and 24-hour urine. (I am probably going to ask for an SPEP again since that was a month ago that I got that (and maybe the M-proteins are measurable now, if there are any).

If those results come back negative from the 2 new tests, I probably will want to see another doc to see what he has missed. I should also mention that I have actually seen 4 different GPs in the practice. I saw my regular doc the first time I was having symptoms in late December (it was my first time using Tufts). I also met his attending to review my issues, too, as my regular doc was a first-year doc and just finished medical school.

My symptoms got worse shortly thereafter (bone pain spread from my initially lower spine / tailbone area and legs), so I asked to come back in again and my regular doc was not available for 2 weeks, so I got seen by a different GP in the practice. He was the one who ran the tests to rule out multiple myeloma (first doc didn't run any tests for myeloma other than general bloodwork). First doc only had me do some x-rays, which came back negative.

I went back to see my regular doc 2 weeks ago as a follow-up (and also met a different attending of his). At that point, they were at a loss with what was causing my issues (I didn't do much research on multiple myeloma at that point, so I didn't know any better to have them run additional myeloma tests to rule out the 20% chance that the SPEP). So I have seen 4 GPs to bounce ideas off of.

Also saw a rheumatologist, so it's really 5 docs at Tufts now (and a gastro for other unrelated issues). So basically not sure if I see a new practice GP if it will be any more help. I need to really get in front of a hematologist / oncologist but, again, they won't see me, as the blood tests and x-rays aren't pointing to a blood cancer at this point.

Cheryl,

Dana Farber wouldn't talk to me because my previous tests didn't point to multiple myeloma, so I am at a stand-still there. In terms of that myeloma doctor at Tufts, I had researched him previously, but no one in hematology / oncology, including him, will see me until my regular doctor refers me over, which probably won't happen unless the Freelite or 24-hour urine test come back off somehow (or if any other blood chemistry comes back off having it run for the third time).

I feel like I am at a loss of what to do at this point.