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Can a bone marrow test help?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Singout, Jul 6, 2016.

  1. Singout

    Singout

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    Hi, everyone,

    I've seen a haematologist who is quite supportive and more aware of ME than other specialists a few times in the last year. I've had irregular blood levels which he has diagnosed as MGUS: monoclonal gammopathy of unknown significance. My IgM level is low, my IgG level is at the low end of "normal" and my IgA level is high.

    At my most recent visit he said the "gold standard" test to rule out myeloma...although he isn't concerned about myeloma and neither am I...would be a bone marrow test.

    If I'm not worried about myeloma, is there anything else such a test might reveal (that maybe he isn't aware of)? Is there any point in getting one? How much pain/stress would be involved? Thankfully, it's covered by our health care plan.

    Thanks!
     
  2. Daffodil

    Daffodil Senior Member

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    hi singout. monoclonal gammopathy is something dr. Peterson tests for. It MIGHT mean you are at higher risk for some kind of cancer maybe? or it could mean nothing. I suspect it might have something to do with active viruses in us....but I am just guessing.

    can you see a CFS specialist? I highly recommend dr. demeirleir!

    a lot of us have immunoglobulin deficiencies. it might make you eligible for immunoglobulin IV....

    xo
     
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  3. Old Bones

    Old Bones Senior Member

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    @Singout It sounds like we've been going through a similar diagnostic process. I, too, obtained an abnormal test result (cryofibrinogen) that might indicate myeloma. When each subsequent test was also positive, the final determinant was a skeletal survey to definitively rule out myeloma. Is this the test your haematologist meant? In my case, it involved a series of x-rays -- one or more for each major bone in my body (everything but my hands and feet). Except for a few uncomfortable contortions, it wasn't painful.

    I experienced some stress associated with having so many x-rays at one time. Each time this happens (and it has several times for different reasons), I wonder how much my risk of cancer is being increased. It sounds like the bone marrow test is deemed optional in your case. I wasn't given a choice -- my internal medicine specialist indicated she had to order this test for me, based on my positive blood and urine tests. Perhaps the protocol is different in your medical system.

    Fortunately, my skeletal survey was fine. As a result, my diagnosis is MGUS. My abnormal IgG test was described as IgG lamda monoclonal protein. The recommendation in the internist's report is for long-term follow-up to rule out progression to multiple myeloma. I'm not aware the testing I received revealed anything else; however, if I learn more at my next appointment, I'll let you know.

    Good luck with your decision on whether or not to have the test. For now, I'm at peace over having been required to have the test. The negative result definitely put my mind at rest.
     
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  4. justy

    justy Donate Advocate Demonstrate

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    A bone marrow biopsy can also rule out Mastocytosis if you have MCS or MCAS symptoms then that would be useful info - but only if they were looking for mast cells. Dr Afrin has found MGUS is quite common in Mast cell activation syndrome.

    I have a high IGM for the past couple of years, but here in the UK they are not interested in investigating it futher...
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I wouldn't jump for joy if someone recommended a bone marrow biopsy or aspiration for me. I observed one being done on a patient when I was a student medical technologist. I had to leave the room because it upset me to see the patient in such pain. No walk in the park obviously.
    Here's some background on reasons to have a bone marrow biopsy or aspiration, which is probably what your hematologist was referring to:
    http://www.webmd.com/cancer/lymphoma/bone-marrow-aspiration-and-biopsy

    There's also some discussion about how it is done and what it feels like: "crunching noises," :eek: etc.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @justy I have also had slightly elevated IgM for the last few years but the other levels are normal. I did not know this could correlate with MCAS. What does Dr. Afrin say about it? So far my doctors were never concerned by it and I never had any further testing.
     
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  7. Singout

    Singout

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    Thanks, everyone. I initially had an extensive x-ray...I think what @Old Bones is talking about... and my haematologist used that and other things to rule out myeloma. I, too, will be getting yearly blood tests to monitor it. He's giving me the bone marrow biopsy option so he can feel like he's done everything he can. I don't want it if it's really painful or stressful (thanks, @CFS_for_19_years) unless it reveals something useful other than myeloma.

    I'll look a bit more into what @justy is saying re Mastocytosis; MCS or MCAS symptoms; Mast cell activation syndrome, which I know nothing about.

    @Daffodil: like you (I think) I'm in Ontario, and I've seen the folks at the WCH Environmental clinic. I doubt that I have the energy to go to the U.S., and haven't encountered any Canadians yet whose health has significantly improved from doing so. Has yours?

    When I first got really sick a couple of years ago I compiled a list of tests that were recommended on various sites, and got many of them done here. So many of them are "normal" that I'm reluctant to get more done at financial and health sacrifice (I have savings but no insurance outside of OHIP) unless I'm sure it would make some kind of real difference.

    Thanks again!
     
    Last edited: Jul 7, 2016
  8. Daffodil

    Daffodil Senior Member

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    hi @Singout wow i didn't know you are in Ontario!

    honestly, everyone in Ontario is a waste of time. Probably everyone in Canada, too.

    I have seen several specialists in the USA at a huge cost to my mother....almost all her savings are gone.

    Finally, Dr. DeMeirleir saved my life. I was almost dead. Now, I can shop, cook, take care of myself.

    I've been sick 22 yrs. This doesn't get better; without treatment, it gets worse and its serious.

    xo
     
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  9. justy

    justy Donate Advocate Demonstrate

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    He mentions it in hi book in passing - just says it seems common in his MCAS patients. ill try and look it up later - the books downstairs right now - cant wait to move next month to my new house which is all on one level!
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    No worries and my IgM is always just slightly high. Like if the range ends at 270, mine is 276 or something like that (am making up the numbers b/c don't have the test in front of me- but it was never alarmingly high.) I also bought Afrin's book but don't have it with me at hotel but once we move into new unit in four more days, I really do plan to continue reading it... and enjoyed the first chapter which is as far as I got so far! Good luck with your new move, too.
     
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  11. Old Bones

    Old Bones Senior Member

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    @Gingergrrl I, too, was interested in what Doctor Afrin says about the MGUS and mast cell link as mentioned by @justy (Thanks!). I don't know if anything appears in the main text of the book . But, a segment on Monoclonal gammopathy of undetermined significance appears on pages 383 of Appendix 1: Medical Terms. It talks mainly about the clinical significance and predicted progression/risks of MGUS. At the top of page 384, Doctor Afrin states:

    " . . . both MGUS and myeloma are potential consequences of mast cell disease, but it is completely unknown at this point what fraction of the MGUS and myeloma populations actually harbor detectable mast cell disease as a "co-morbidity" (let alone as the underlying, causative condition), and likewise, it is unknown at this point what fraction of the mast cell disease population actually harbors MGUS or myeloma."
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    I too think if you are going to get a bone marrow biopsy, also arrange for testing for mast cell activation or systemic mastocytosis throu it too, that test is like the near gold standard test for it which may pick it up if other tests have missed it.

    Mast cell disorders and systemic mastocytosis has a very like presentation to ME/CFS and can cause a big range of symptoms and most patients with this disorder go missed for years and years, many never get diagnosed properly. My uncle has this and believes my ME is actually this but I havent found a dr willing to do the bone marrow test which picked up my uncles (he had two blood tests for it previously which missed it. He went something like 10 years and his become life threatening before it was diagnosed).
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Old Bones Thank you so much for this information and even linking the page number for me! Now that we are in our new unit, I plan to actually read Dr. Afrin's book even if it takes me a year LOL.

    Do you (or anyone) know how high someone's IgM would need to be to be considered MGUS? Mine has been slightly high the last few years but just a few points above the top of the range and doctors have never been concerned. My husband's first wife died of multiple myeloma at age 39 (many years ago) so am fairly familiar with it but had no idea about the link to high IgM or the term "MGUS."

    I agree that the overlap between ME/CFS and MCAS are so similar that I find it confusing to know if I only have MCAS and POTS (with a bunch of other weird autoimmune, autonomic, and cardio-pulmonary issues) or if I have ME/CFS in addition to MCAS/POTS, etc. My MCAS confirmed by histamine and prostaglandin tests plus clinical presentation and when I read the criteria (which I plan to post sometime) from the masto society, I either have (or have had in the past) about 35-40 of the 50 symptoms of MCAS vs. when I read the ME/CFS criteria, I have many of the symptoms (especially those re: dysautonomia) but then many symptoms that I do not have so I waver back and forth if I fully meet the criteria for ME/CFS whereas there is no question that I meet the criteria for MCAS.
     
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  14. Old Bones

    Old Bones Senior Member

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    @Gingergrrl I hope the disruption of your housing situation is behind you, and that you are doing somewhat better after your IVIG infusion.

    I've finally unearthed my test results from one of the many stacks of filing that litter our home. I'm not sure my results will be particularly helpful. From my experience, various labs interpret and report results differently. For me, the test that resulted in my MGUS diagnosis was reported only as "Positive", described as a "trace" (less than 5 percent) of cryofibrinigen as well as a monoclonal IgG lambda monoclonal protein. A further test recommended (serum protein electrophoresis) obtained a result of 0.22 compared with a reference range of 0.00 - 0.15. So, this seems to match your IgM results being only a few points above the top of the range.

    My husband's father died of multiple myeloma (but in his 70's), so I'm also somewhat familiar with the disease.

    I can certainly relate to your confusion regarding the overlap of many conditions. My diagnosis of ME was made long before the second, third, fourth (and so on) layers appeared, so I feel pretty confident it is accurate. Besides, I meet 100 percent of the strictest ME criteria. But, I also have (or have had in the past) more than 40 of the 58 Masto symptoms listed on the Canadian site.

    http://www.mastocytosis.ca/signs.html

    With respect to your last paragraph, I've often wondered why Doctor Afrin chose such a cryptic title for his book -- "Never Bet Against Occam". It finally made sense when I reached the definition of Occam's Razor in the appendix of medical terms which states:

    "This is the short-and-sweet phrase encapsulating a basic, universal-truth notion that among multiple possible explanations for a given set of observations, the explanation that accounts for the largest subset of the observations (ideally the entire set off observations) is that explanation that is most likely to be the true explanation, regardless of how 'common' or 'uncommon' that explanation might be. Occam's Razor is particularly relevant to mast cell disease because mast cell disease often presents with a very large set of symptoms, leading doctors to suspect diagnoses that account for one subset of those symptoms or another, but rarely suspecting mast cell disease either because they do not know that mast cell disease can cause many of those symptoms and/or because they think that mast cell disease is very rare and therefore is highly unlikely to be causing all of the symptoms. Importantly, though, the truth of Occam's Razor is completely independent of how prevalent/rare or how common/uncommon, a given explanation is, and if mast cell disease can better account for a larger portion of the full range and chronicity of the patient's symptoms than any other diagnosis, then mast cell disease (far more likely MCS than the known-to-be-quite-rare mastocytosis) is the most likely diagnosis."

    Of course, the Occam concept doesn't capture what you've already expressed -- that when it comes to these poorly understood conditions, it's not necessarily an either/or situation, but instead can be many existing concurrently.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Old Bones and our new unit is great and I am actually feeling better after the initial side effects from the IVIG have worn off. I felt sick for about 2-3 days post IVIG but last night and today I actually have more muscle strength. My upper body and arm strength is very low at baseline but today I was able to open shower door myself while standing, grab the items I needed to use, hang up towels on rack, change toilet paper roll, etc, without any assistance! These are all things that a normal person would do without thinking but for me had been impossible. Whether one dose of IVIG can improve my muscle strength or this is a random occurrence, I have no idea. And yesterday we went out and did errands and went to dinner (in wheelchair) and still feel stronger today.

    I wish I knew what this all meant but after 2-3x of my IgM being slightly high, I was always told that it was insignificant and no further testing was needed. I did not have the other testing that you mentioned so am not sure how I would compare.

    I am so sorry to hear that and it was a brutal disease for my husband's late wife, the mother of my step-daughter. She died within two months of being diagnosed but they suspected she may have had it for ten years undiagnosed.

    We differ in the sense that I do not meet 100 percent of the ME criteria on any of the scales. I do for the dysautonomia sections (POTS, hypotension, dyspnea, poor temperature regulation, abnormal sweat response, etc) but for some sections, I do not meet any of the criteria. But on the Masto symptoms, I meet (or met in the past) nearly all of them.

    I thought it was a strange title as well even though I was familiar with the Occam's Razor concept. To me, Occam's Razor implied that the easiest, most simple answer was the correct answer yet Mast Cell Diseases are so incredibly complex and differ so much from person to person that it seemed to be the opposite of how I understood Occam's Razor.

    I totally agree and I know my situation is multi-factorial (hoping that is the right word!) Am certain these auto-antibodies are weakening my neuromuscular junctions including lungs and diaphragm (at least that is my best guess) plus the dysautonomia and mast cell disease. So if the IVIG can correct any piece of it, I will be thrilled.
     
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  16. Kati

    Kati Patient in training

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    @Gingergrrl it's quite a dramatic response from IVIG for you, that's impressive! i hope you will continue to improve and that the effects will be lasting. :thumbsup::thumbsup::thumbsup:
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Old Bones I wanted to highlight the mast cell symptoms that I have (or have had in the past) to see how they compare to yours and copied your link and the 58 symptoms listed by the Canadian Masto Society (which has a phenomenal list IMO.) The ones I highlighted in red are symptoms that I either currently have or have had in the past.

    So in seeing the number of symptoms that I match with, plus testing high for histamine and prostaglandins, do I have MCAS with co-morbid POTS, Hashimoto's and weird auto-antibodies or do I have ME/CFS? Does the slightly raised IgM fit better with MCAS?

    http://www.mastocytosis.ca/signs.html

    • skin lesions or sores
    • skin rash, spots, redness
    • hives
    • persistent fatigue
    • itching
    • flushing & severe sweating
    • joint, bone pain
    • headaches
    • tachycardia (racing heartrate)
    • eyes tearing/dry, eye pain
    • persistent body/tissue pain
    • difficulty exercising
    • vertigo
    • episodes of low body temperature
    • unexplained Vitamin B12 deficiency
    • scents/odors/chemical reactions
    • difficult menses (females)
    • numbness & tingling in face and extremities
    • skin feels on fire
    • unexplained anxiety
    • sudden drops in blood pressure
    • fainting
    • persistent diarrhea
    • vomiting
    • unexplained weight loss
    • cognitive impairment
    • sinus problems
    • chest pain
    • vision problems
    • hair loss
    • mouth sores
    • nausea
    • swelling & inflammation
    • odd reactions to insect stings
    • anesthesia difficulties
    • anemia
    • thyroid problems
    • decreased bone density
    • unexplained weakness
    • shortness of breath
    • sunlight sensitivity
    • temperature (hot/cold) sensitivity
    • difficulty with foods, drinks
    • anaphylactoid reactions
    • anaphylaxis
    • gastrointestinal pain, bloating
    • unexplained medication reactions
    • enlarged liver/spleen
    • liver/spleen/bladder/kidney pain
    • enlarged lymph nodes
    • frequent urination
    • recurring infections
    • neuropathic pain
    • constipation
    • iron deficiency
    • unexplained bruising, bleeding
    • malabsorption
    • intermittent tinnitus or hearing problems
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Kati for the good wishes and I really do not know if this is from one infusion of IVIG, that would seem quite strange to me. My next IVIG is on 8/10 at a higher dose (36 grams instead of 24) but at slower infusion speed.

    Now I know to expect to have side effects and feel sick for 2-3 days afterward before feeling better. If this pattern repeats then I feel very hopeful about it and my next plan to try other things. Was so worried IVIG would cause anaphylaxis but it didn't at all. Although I know each batch is technically different so risk is still there.

    I don't want to get overly excited but since the IVIG, I have not needed to take any Midodrine either (which had stopped working for me so not a big loss.)

    Sorry @Old Bones to detract from the topic of elevated IgM & MGUS, and how this might connect to MCAS, which really interests me and I still hope to learn more about this. Thank you for tagging me with the info.
     
    Last edited: Jul 24, 2016
  19. Old Bones

    Old Bones Senior Member

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    @Gingergrrl I agree -- the Canadian Masto Society symptom list is not only the first, but also one of the best, I've found. For comparison, the following are my symptoms -- most current, some past:
    • skin lesions or sores
    • skin rash, spots, redness
    • hives
    • persistent fatigue
    • itching
    • flushing & severe sweating
    • joint, bone pain
    • headaches
    • tachycardia (racing heartrate)
    • eyes tearing/dry, eye pain
    • persistent body/tissue pain
    • difficulty exercising
    • vertigo
    • episodes of low body temperature
    • unexplained Vitamin B12 deficiency
    • scents/odors/chemical reactions
    • difficult menses (females)
    • numbness & tingling in face and extremities
    • skin feels on fire
    • unexplained anxiety
    • sudden drops in blood pressure
    • fainting
    • persistent diarrhea
    • vomiting
    • unexplained weight loss
    • cognitive impairment
    • sinus problems
    • chest pain
    • vision problems
    • hair loss
    • mouth sores
    • nausea
    • swelling & inflammation
    • odd reactions to insect stings
    • anesthesia difficulties
    • anemia
    • thyroid problems
    • decreased bone density
    • unexplained weakness
    • shortness of breath
    • sunlight sensitivity
    • temperature (hot/cold) sensitivity
    • difficulty with foods, drinks
    • anaphylactoid reactions
    • anaphylaxis
    • gastrointestinal pain, bloating
    • unexplained medication reactions
    • enlarged liver/spleen
    • liver/spleen/bladder/kidney pain
    • enlarged lymph nodes
    • frequent urination
    • recurring infections
    • neuropathic pain
    • constipation
    • iron deficiency
    • unexplained bruising, bleeding
    • malabsorption
    • intermittent tinnitus or hearing problems

    Considering the amount of research you've done, you probably have a more accurate understanding of your likely diagnosis than anyone (including most, if not all, of the many medical practitioners you've seen). However, you are missing a couple of symptoms that would make me question ME/CFS as your dominant diagnosis. First, although fatigue is not essential for an ME/CFS diagnosis, I believe most patients do experience persistent fatigue during at least some stages of the illness. Second, you didn't highlight cognitive impairment -- one of the most disabling symptoms for many of us. Just an opinion, based on my own experience.

    No need to apologize for getting slightly off-topic. The histamine/mast cell issue is the one I'm most trying to figure out these days. I'm at a loss regarding what I can safely eat. My body is a pretty uncomfortable place to live these days, and I think I could achieve the greatest improvement in comfort (as opposed to function) by dealing with this complication..
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Old Bones It's interesting to see your list of MCAS symptoms compared to mine and am so curious how/if my increased IgM relates to things (if at all?) and some day intend to ask my doctor about this. And I definitely agree with you that the Canadian symptom list for MCAS/Mastocytosis is the best I have ever seen.

    It's true I have done a lot of research and seen a lot of doctors but am still about as clear as mud how to summarize my diagnosis. I have many neuromuscular and autoimmune symptoms (besides the MCAS and POTS) but just do not feel that ME/CFS best describes my experience. I almost wish it did, so I could stop searching, but I just don't (even though it is a very close match in certain ways like the viral titers and low NK functioning, etc.) I just feel like I would experience fatigue, PEM and brain fog like others on this board and I don't (vs. my immediate shortness of breath and muscle weakness with basic tasks.)

    Am glad I didn't go too off topic and I agree with you, if you can get the MCAS under better control, you will absolutely feel an improvement in comfort (even if not in function.) I really like how you described that and it is pretty accurate.
     

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