[jshock1]

Concerned about possibilty of multiple myeloma

by jshock1 on Fri Mar 20, 2015 2:09 pm

Hi Everyone,

I am concerned about the possibility of having multiple myeloma. Over the past 3 months, I have had increasing pain in different spots through my body and some other symptoms.

I have had pain in my spine that hurts to push on and hurts from time to time when I move the wrong way. I also have been having pain in both of my hips, both on the inside of the hip and the outside of the hip. Along with this, I have also had pain in my rib cage, both upper and lower rib cage, mostly in the front and side of my rib cage.

I am constantly tired and not much like myself. I have always been very active. I am the kind of person who likes to stay busy and doesn't enjoy much down time at all. I have been an avid rock climber and coach and play soccer for the high school that I teach at. However, in early January I had my lower back spasm one night so bad that I couldn't even lay down after I came home from climbing. I went to the doctor and had an x-ray done to make sure that I did not have a fracture. The x-ray came back negative and the doctor sent me on my way.

However, the pain did not go away and my spine was sore to touch. I had pain that was shooting around the front of my abdomen / groin area. As you can imagine, I was pretty worked up about this all since I have never had any major bone issues before in my life.

Over the next couple of weeks, I noticed that my rib cage began to hurt and was sore to touch in places and then it moved into my hips where it currently still is. I have also noticed that whenever I urinate I have a lot of bubbles, some of which go away very quickly and make a fizzing sound, and some that are larger and stay around for quite some time or may not go away at all.

I take Prilosec (omeprazole) for GERD, which I recently switch to because my insurance will no longer pay for Dexilant (dexlansoprazole) (what I had been taking for the last 5 years)

I have had my doctor complete a chest and thoracic x-ray and some blood tests as well in late January (29th)

Results are as follows:

WBC 5.8 Range 3.4 - 10.8
RBC 5.31 Range 4.14 - 5.8
Hemoglobin 16.5 Range 12.6 - 17.7
Platelets 268 Range 150 - 379

Creatinine 1.06 Range 0.76 - 1.27
Calcium 9.9 Range 8.7 - 10.2
Protein, Total 7.1 Range 6.0 - 8.5
Albumin 4.8 Range 3.5 - 5.5
Globulin 2.3 Range 1.5 - 4.5
A/G Ratio 2.1 Range 1.1 - 2.5
Bilirubin 0.6 Range 0.0 - 1.2

ESR 2 Range 0 - 15
Lyme 0.91 Range 0 - 0.90
RA Factor 8.0 Range 0.0 - 13.9
ANA w/reflex Negative
Thyroid Negative

Since I am still in pain, my PCP sent me to a rheumatologist where the doctor basically told me that there was nothing major wrong with me, but ordered some blood tests to be sure. I did actually ask her about multiple myeloma, but she told me there was no way that I had it since my blood tests had come back fine and my x-rays were fine.

I'm not sure if I am overreacting, but I would like some sort of normalcy back since I have not slept very well for the last few months over all of this.

I am awaiting the results of a CRP, vitamin D deficiency, and CK blood tests.

The RA doctor wants me to do physical therapy for 8 weeks and come back and see her then. I feel like that is a really long time in between appointments.

Any help in all of this would be wonderful. Thank you ahead of time for your responses and I wish you all well.

[jhorner]

Re: Concerned about possibilty of multiple myeloma

by jhorner on Fri Mar 20, 2015 2:25 pm

Hello Jschock1,

It is good news that your X-ray was negative and that all of your basic blood work is normal because this does make it less likely that you have multiple myeloma.

However, as I understand it, you can not effectively rule out multiple myeloma without a serum electrophoresis and immunofixation (and, considering some folks are nonsecretory, ultimately a bone marrow biopsy). If these tests show a spike, then it is a staging game thereafter.

I did notice that your Lyme titer is a bit high. Is it possible that you suffer from Lyme disease? I believe the protocol for a result such as yours is retesting a few weeks later. There are some folks on this forum who have Lyme and perhaps could speak to your symptoms.

Best
J

[NStewart]

Re: Concerned about possibilty of multiple myeloma

by NStewart on Fri Mar 20, 2015 5:34 pm

J gave you some good information. X-rays don't show bone lesions from myeloma until there is already 30% destruction of the bone. Better scans would be MRI and / or PET / CT, especially since you have pain that has been continuing for so long. In addition to the blood tests that were suggested, a 24 hour urine test would be helpful.

PT isn't a bad idea, and 8 weeks between follow-up once starting PT is a normal length of time for PT to be successful. But, if your pain increases with PT you should stop and return to your doctor prior to the 8 weeks.

All the best to you and hopefully your symptoms are from very strained muscles,
Nancy in Phila

[mrozdav]

Re: Concerned about possibilty of multiple myeloma

by mrozdav on Fri Mar 20, 2015 5:57 pm

Jshock1:

What jhorner wrote in response to your post is, in my opinion, right on point as far as your testing goes. I had all normal test results (but no aches and pains as you describe) when I went to see a rheumatologist because I was curious as to why I should have osteoporosis. It just did not seem to fit in with my medical history and lifestyle. She ordered the immunoglobulin test that established that I had MGUS, a precursor to myeloma. I cannot know for sure whether the MGUS was responsible for the osteoporosis, but, after my initial shock, I was so glad that my mere curiosity led to the diagnosis.

I do not know what your age is, but it seems that myeloma is a condition mostly of older people (although on this forum it is surprising how many really young people suffer from it). It does not cease to amaze me, and bother me too, that when patients come to their doctors complaining of severe spinal and rib pain, the immunoglobulin test is not immediately ordered as a matter of routine. Can this test really be so expensive to perform?

I have read here on the forum that some people have been misdiagnosed repeatedly by their doctors, for months and months, before the myeloma is discovered, and by that time they are into organ damage that should have and could have been avoided. What am I not understanding here?

If, in fact, an immunoglobulin test (which may not be the perfect detection test, as jhorner pointed out) is not a complicated and expensive test, why should it not be used more often as a routine matter with patients like yourself?

I would be interested in hearing from others on this forum, who are far more knowledgeable than I about these issues why one presenting with pains as severe as you describe should not have the basic test without having to beg for it. If, in fact, the test could be as useful as it turned out for me, perhaps a campaign to alert the average general physician about its usefulness should be undertaken by the myeloma community or supporting organizations. If there are weighty reasons for not doing the test as a matter of course, I would like to know them. One less thing to be amazed and bothered by.

[Multibilly]

Re: Concerned about possibilty of multiple myeloma

by Multibilly on Fri Mar 20, 2015 6:56 pm

Based on my latest lab bill, the negotiated insurance rates (what the insurance company has to pay the lab for the tests ... you would probably only pay a percentage of these rates) in the USA for Aetna are:

IFE: ~$20
SPEP: ~$10
Quantified Immunogloblulins: ~$25

These are not expensive tests.

[jshock1]

Re: Concerned about possibilty of multiple myeloma

by jshock1 on Fri Mar 20, 2015 7:22 pm

Thanks for the replies everyone.

I am actually 30 years old, which is part of the reason my doctor doesn't believe this could be multiple myeloma.

I also have an HMO, so I need a referral to get any blood work done. It really has been a battle to get anything done. I had to fight for the CBC and CMP and other tests as well.

I'm not really sure where to go from here. I obviously don't want it to be multiple myeloma, but I also don't want to push it off and hope it isn't either.

I will have to go back and ask to have them done or see a hematologist.

Did you have to see a specialist to get the blood work done?

[mrozdav]

Re: Concerned about possibilty of multiple myeloma

by mrozdav on Fri Mar 20, 2015 7:42 pm

jshock1: The rheumatologist urged me to see a hematologist as soon as she learned that my immunoglobulin was elevated. I immediately made an appointment, at which time other critical tests were performed to establish a baseline. I continued in MGUS for nearly five and a half years before progressing to Stage I myeloma. My then hematologist then urged me to contact my current myeloma specialist, saying that it was essential that I be treated by a specialist who was totally de­voted to this disease.

I can understand that your doctor does not think that you have myeloma, given your young age, and he is probably right. But, then again, what harm could a simple additional blood test do?

[jshock1]

Re: Concerned about possibilty of multiple myeloma

by jshock1 on Mon Mar 23, 2015 12:58 pm

Thanks for the information everyone.

I made an appoint to see my PCP for tomorrow evening. I am going to try and push for the tests to be done.

I have also been trying to drink tons of water to keep myself hydrated to solve the bubble/fizzy urine issue. I still have it so I'm really hoping that doesn't mean I am having proteinuria.

I have asked her about doing the SPEP but she stated that since my total protein, and Albumin and Globulin were all within the normal range she would not order it.

If she does not want to order the tests I am going to ask to be sent to a hematologist. I guess if worse comes to worse I can always order the tests myself through labcorp or quest or another facility.

Has anyone had to go this route as well? I see the non-negotiated rates on my labcorp bill and they are pretty expensive.

[jshock1]

Re: Concerned about possibilty of multiple myeloma

by jshock1 on Wed Mar 25, 2015 9:31 am

Hey Everyone,

I'm not sure if anyone is reading this still but I figured I would give you an update.

I received some test results from my rheumatologist. My vitamin D is low at 20.7 (range is 30 - 100)

I also did a quick Google search about vitamin D and foamy urine; turns out they are both associated with kidney failure so of course that freaked me out. I called the rheumatologist's office, and they said I would have to ask my PCP to do a kidney or urine test since they wouldn't order one, but that foamy urine is usually a sign of protein in the urine. So, go figure.

I also saw my PCP last night. She agreed to send me to a hematologist/oncologist. She said she would order a SPEP but not the other tests as she does not know how to interpret them and that is her policy on order tests.

I have the appointment on Tuesday at 12:45 p.m.

Hopefully we will have some information soon.

Of course now I am worried about permanent kidney damage. Anyone have any suggestions on this? Should I wait it out until Tuesday or is this a much more serious issue?

Thank you in advance for your comments and help!

[mrozdav]

Re: Concerned about possibilty of multiple myeloma

by mrozdav on Wed Mar 25, 2015 10:01 am

jshock1: You need to stay calm. A lot of people are deficient in vitamin D. The creatinine test is a usual marker for kidney function, I believe, and your result appears normal (from earlier posting).

Do follow up on tests recommended by your doctors.