[JustMoi]

Think I may have multiple myeloma, doctor not listening

by JustMoi on Mon Aug 29, 2016 8:19 pm

I am hoping someone could advise on how to be taken seriously by my GP.

I have complained of iliac crest (upper rear, upper pelvic bone) pain for well over a year. Pain is worse near the spine now. I have had no injury to the area. The pain now ranges from mild, moderate to severe, pretty much constant in varying degrees.

Also, I have extreme tenderness on the bottom of my lower right front rib. I can feel a lumpy mass and at least one hard nodule.

I have suspected multiple myeloma for at least a couple of years. Now I REALLY do, especially with the constant pain in the Iliac crest, as well as intermittent lumbar spine pain. I have not strained or injured the area at all. The pain is doing nothing but getting worse.

A CT scan 2 years ago revealed a liver "cyst". CT scan a few months ago revealed the mass has grown a half centimeter.

A few years ago I told my GP that "Something is kicking my ass. I feel like I have cancer or some other serious disease ". His response? He smirked, chuckled softly, and said, "You don't have cancer". His tone and demeanor was like, "You don't have cancer you silly goose", like I was being ridiculous.

I fear I will get a cancer diagnosis way too late.

I have many other symptoms, listed below. Thank you for reading and for anyone that responds!

Symptoms:

Clavicle tumor - right
Ascites, abdominal
Varying degrees of fatigue

Anemia, slight - blood test, spring 2016

Pain right Iliac crest, near spine - severe at times
Lumbar spine pain - intermittent
Right lower rib, back - severe occasionally stabbing pain, exact spot every time
Right lower rib, front - extremely tender along rib bottom. Hard nodules felt

Omentum pain - Starts at top of rib cage, then radiates to lower omentum. Then, an unwell, sick feverish feeling overcomes me

Severe feet rash - diagnosed as psoriasis (? - doubtful. all this is related)..

Very frequent infections - 5 colds / flus over last 7 months.

Sternoclavicular tumor - right
Small elbow tumor - ulnar nerve entrapment diagnosed

2 years ago - Elevated levels: WBC, alkaline phosphatase, bilirubin, creatinine.

[rick]

Re: Think I may have multiple myeloma, doctor not listening

by rick on Mon Aug 29, 2016 11:45 pm

Hi JustMoi.

I am sorry you feel your GP does not take you seriously. My advice is pretty basic: Find another one.

I don't know what the underlying issues might be for the lack of communication and a meeting of the minds – and there might be many – but everyone deserves a doctor that they can partner with, talk to, and come to an agreed upon diagnostic and treatment plan.

You don't have that.

If you feel your doctor smirks at you, as opposed to laughs with you and calms your concerns, however irrational, than you have the wrong doctor.

Put your past labs and past imaging into a binder and present your concerns to fresh eyes.

[kshornb]

Re: Think I may have multiple myeloma, doctor not listening

by kshornb on Tue Aug 30, 2016 6:16 am

Hi JustMoi:

I could not agree with Rick more, and I would make an appointment with someone else before sunset today.

I similarly had a doctor who treated me offhandedly, and his answer to all of my complaints seemed to be that I was "depressed" and that I needed anti-depressants. This individual wrongly diagnosed me with hypothyroidism for 2 years (my GYN finally correctly diagnosed me).

The last straw for me was when I went to see him complaining that I had multiple enlarged lymph nodes and was exhausted, his thoughtful diagnosis was that "if I wasn't so skinny I wouldn't notice them". I picked up my records that day, and never went back.

Your health is too important for your doctor not to not take seriously.

Best of luck to you.

[Victor L]

Re: Think I may have multiple myeloma, doctor not listening

by Victor L on Tue Aug 30, 2016 6:35 am

Hello JustMoi,

Rick is right, you must take whatever steps are necessary to put your mind at ease and either confirm that you have an as yet undiagnosed illness or that (hopefully) you do not have one.

In the world of hospitals and healthcare there exists a very real risk that a serious condition can go for months, even years without being discovered and you may be the only person who can save the situation. The reason for this is that if a wrong diagnosis is made by a doctor, especially for something as obscure and rare as myeloma, other health professionals can mistakenly accept that you do not need further diagnostic work.

It happened to me. I became seriously ill with myeloma in 2008 with hospitalisations and even with emergency ambulances coming to the family home, in 2009 I became a registered disabled person because I simply could not undertake any heavy work without being in danger of passing out.

How did such a situation arise? I will be brief, back in 1991 I suffered an episode of atrial fibrillation (an irregular heart beat), I was in my late thirties, I spent a few days in hospital and from then on I had to undergo regular examinations and I was also given a medication, a beta-blocker called atenolol. However I looked very healthy and continued a normal active life.

When I was hospitalised in 2008 I was seen by a cardiologist who, quite rightly, ordered a detailed blood analysis. The results were close to normal, and showed up no evidence of anemia, kidney problems, excess calcium etc. ( In the early stages myeloma may have little or no impact on a normal blood test analysis). The fateful re-diagnosis was thus made, I simply needed a change of heart medication and various ultrasounds and x-rays. They revealed nothing; But I knew I was more seriously ill than this although myeloma was something I had never even heard of. For the next three years I suffered in virtual silence, it seemed useless to raise my concerns during consultations because the responses were very predictable; I have a heart condition, I need a stronger heart medication or I am simply worrying about the normal side effects of the heart medication.

Blood tests only started to reveal the true problem in 2011 for now the myeloma was progressing to the point where my red cells had fallen to less than 3,900,000 and I looked very unwell. In January 2012 the myeloma was diagnosed by a simple electrophoresis test ordered up by a different doctor. By now I was at stage 3 with this illness, three valuable years had been wasted simply because other specialists were assuming that a cardiologist was correct and that the patient was simply worrying about nothing. Incidentally, one week ago I underwent my yearly cardiology check and I was told that my heart is in perfect health.

You must get a second opinion even if you must go to an independent health clinic or hospital, it will be worth the cost. Please do not delay for too long and do not take 'no' for an answer until your mind is put at ease, the key test for myeloma is the electrophoresis analysis, it is not expensive and takes just a day or two, it is a simple blood test.

Good Luck,

Victor L

[Multibilly]

Re: Think I may have multiple myeloma, doctor not listening

by Multibilly on Tue Aug 30, 2016 7:02 am

Hi Justmoi,

I agree with the others, especially given your bone pain and elevated creatinine. It's also a bit peculiar that your GP would order expensive MRIs but not order the basic, inexpensive blood tests that would quickly screen for a disease such as multiple myeloma.

But if your insurance allows it (which mine does), why not bypass a GP and just go straight to a hematologist and have him/her run the basic battery of myeloma blood tests? I say this because not all GPs are familiar with multiple myeloma and know which tests to run.

Also, not all hematologists are created equal when it comes to multiple myeloma (although any decent hematologist will know which tests to run). If you would like to seek out a hematologist that specializes in multiple myeloma (which most of would recommend doing), let us know what city your are in and folks on this forum can make some suggestions on where to find these multiple myeloma specialists.

[jhorner]

Re: Think I may have multiple myeloma, doctor not listening

by jhorner on Tue Aug 30, 2016 1:51 pm

Hello Justmoi,

It seems as though a multiple myeloma diagnosis is either accidental or folks suffer a long time without the cooperation of a GP that will assist with finding out what might be wrong. My GP at the time did run the SPEP test because I had chronic infections and it came back with an M-spike and I was referred to an oncologist / hematologist to monitor MGUS.

I got very sick a few years later and my chronic infections became acute and I suffered from fatigue, malaise, and pain, but the oncologist refused to accept that it might be multiple myeloma-related and dismissed me year after year. I self referred to a clinic in Boston and they diag­nosed me.

If your insurance will allow it, an option is to self refer to a clinic, since most specialists require a referral even if your insurance does not. I now have a different oncologist who I really respect and have a good relationship with.

Good Luck

[DallasGG]

Re: Think I may have multiple myeloma, doctor not listening

by DallasGG on Tue Aug 30, 2016 3:17 pm

In May 2013 I went in for an annual physical exam. My GP noticed that I was slightly anemic and told me that I should go see a hematologist, which I did. The hematologist I saw just happened to be an oncologist as well. A couple of weeks later, I was diagnosed with multiple myeloma.

If your insurance allows it, set up an appointment on your own with a hematologist / oncologist and get the appropriate tests run instead of wasting time trying to convince your GP to get those tests done.

[lys2012]

Re: Think I may have multiple myeloma, doctor not listening

by lys2012 on Wed Aug 31, 2016 11:52 am

I agree, find a new doc! An internal medicine doctor might be a good person to see if you can self refer to hematology (we can't do that in Canada).

I was sick for over two years with active myeloma, and was being treated like you are. That is, brushed off, told I was depressed, or stressed, etc.

I was finally diagnosed after I was admitted to the ER when I kept fainting. My bloodwork showed I was quite anemic (transfusion levels) and had very elevated proteins and other typical myeloma things.

Have you had any bone x-rays? A skeletal survey would be important step in diagnostic journey. (plain x-rays of your back, skull, ribs, upper arms, and legs).

[Christa's Mom]

Re: Think I may have multiple myeloma, doctor not listening

by Christa's Mom on Wed Aug 31, 2016 12:36 pm

Hi JustMoi,

I'm so sorry you are having to deal with this. As others have shared, getting a correct diagnosis can be a challenge. Myeloma is still a rare cancer, and many GPs never see a case. It also tends to be more common over 65, so if you are younger than that it might not be the first thing that come's to your GPs mind.

The fact that you are now showing signs of anemia should be a red flag for your GP, as anemia is one of the symptoms of myeloma. Do you have your blood tests going back a few years? Do they show a downward trend? This might get his attention - especially since it's there in black and white!

But I agree with everyone else. If you can't get his attention, you need to find another doctor. It doesn't have to be a treating doctor, just someone who will take you seriously and help you get to the bottom of all this.

Good luck!

Lyn