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5848755 tn?1378323429

Bone Marrow Aspiration and Biopsy?

I've been fighting something for a bit over seven months now.  It originally started with a pretty bad upper respiratory infection that developed into bronchitis.  That was right around Christmas time.  Since then, the respiratory stuff has been perfectly fine, but I've been running low grade fevers the majority of days since they.  The fevers aren't all day fevers and usually come and go in an hour or two, usually in the early evening (typically peaking somewhere between 100.5 and 101).  

In addition, I've also been feeling really run down (which I suppose makes sense with the fevers) and I seem to go through periods where I just have a terrible time concentrating on much of anything - I call them my "stupid" days because I could look at something for hours and have it not make sense when the average person could make sense if it in a minute or two.  

So I've been to my primary doctor, an infectious disease guy, a rheumatologist and a hematologist and had tons of testing done and nothing has explained my issues.  My question is this: when I last met with the hematologist, he mentioned doing a bone marrow aspiration and biopsy if the rheumatologist didn't find anything (and she didn't).  I go back to see the hematologist on Monday and I will ask him then, but I guess I'm wondering what kinds of things he could hope to find with a bone marrow study given that my CBC's have pretty much been normal.  

There doesn't appear to be any indication in any of the testing I've had done that there is issue related to blood cell creation or anything like that.  The only thing I could think that it might tell me is if my iron stores are low, which might explain the fatigue but not the fevers - my ferritin level in February was 23 and last week it was 19, which I know is in the "normal" range, but everything I've read seems to indicate that these numbers are less than ideal.

I'm okay with getting the bone marrow testing done if it might help, but I'm hesitant to go through such an invasive procedure if there's really not much he could really learn from it.  At the same time, with all of the tests coming back fine, I am feeling more and more like a crazy person every day... *sigh*
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5848755 tn?1378323429
I appreciate the support - I really do.  I know I'm not worthless - it took me a very long time to get to the point where I realized that the way he is treating me has nothing to do with me and everything to do with him.  It's really difficult.  It was sad when I went to go get the bone marrow biopsy done and everyone acted all surprised that I didn't have anyone with me, but the truth is that I was far more comfortable going through it alone than I would have been having him there.  To be honest, what scares me about leaving is the fact that he would, without a doubt, try to take the kids just out of spite.

My husband does the accusing me of cheating thing too.  I honestly don't even care anymore.  Words still hurt, but I honestly don't care if he hates me or thinks I'm a terrible person.  I know I'm not.  

As for the doctor's appointment.  Once again, my temperature was perfectly fine in the office, which is part of the reason I think they all think I'm nutso.  Of course, it usually only goes up for an hour or two in the evening.  I do also take it using a tympanic thermometer, whereas they use an oral thermometer that they barely put in my mouth.  The tympanic thermometer seems to be accurate for everyone in the family but me, and while I sometimes feel like I'm a wacko and that maybe my thermometer is just all kinds of off, I DO feel cruddy and feverish when my temperature goes up.  And the more I've read about trying to get an accurate temperature reading, the more I'm finding that there really isn't a truly accurate way to get a temperature reading outside of really invasive kinds of methods.  It made me wonder if there could be something weird happening that would make my head super hot but not the rest of my body...lol.  I don't know.  I've second guessed myself to death on this - I really have.  I've nearly considered getting a new thermometer and taking a rectal temperature...lol...that's how desperate I am to not feel crazy.  It get worse with every appointment, honestly.  And honestly, the stress and anxiety and depression I have over not being able to figure all of this stuff out - my symptoms probably are partially from anxiety and depression at this point too.

At any rate, I'm still with the hematologist - not being referred out to another doctor yet.  Apparently the hematologist is a glutton for punishment.  I had my follow up appointment this afternoon.  Of course my temperature was fine even though I was feeling cruddy.  He passed me off to an intern at first - I guess they are using me as an example of what crazy looks like :)  I could hear them talking about me behind the door but I couldn't hear what they were saying.  Truthfully, the doctor does seem pretty professional so I'm guess my paranoia is just getting the better of me.

Anyway, the intern asked all of the usual questions and basically just looked confused that all of the test results were normal.  Poor thing - she looked terrified and kept apologizing for everything.  After she was done, she went out and she and the doctor discussed me (again, couldn't hear what they were saying but I heard my name again).  Then the hematologist came back in to talk to me.  Basically all of my marrow tests came back great and super healthy.  Definitely good news, but frustrating.

He went on to say that at this point they are really kind of at an impasse.  They don't really have anything to do on so they don't really know where to go from here.  He said there are basically two paths to take.  The first, less aggressive path, would be to have me take naproxen three times daily consistently for several weeks and see what the response was (his idea behind that being that if it's infectious, the naproxen wouldn't knock the fever out entirely - he is trying to identify whether it is infectious or not).  The other path would be to put me on low dose steroids for several weeks and see where that leads us.  I'm not sure if the thought process is kind of the same as with the naproxen or what.  One of the things I was looking at was low cortisol since cortisol helps regulate body temperature and a lot of the symptoms seemed to fit.  I'm guessing if that were a possibility, the prednsione should help.  

So he asked what my feelings were on the two different options.  I basically told him that I didn't care at this point - I'd pretty much try whatever.  He decided to go the steroid route if I were okay with it, so that's what we're going with.  I started the steroids tonight - low dose prednisone.  He had me schedule a follow up for 3 weeks from today and he said he wants me to give him a call in a week to let him know how things are going (I had to put a reminder on my phone to get in touch with him because I am seriously so brain dead I can't even remember what I'm supposed to do tomorrow let alone in a week).  I have a month supply of prednisone now.  

I don't really know what the plan is in three weeks when I got back to see him.  Obviously, it's not a good idea to be on prednisone indefinitely unless there is some really strong need for it, so who knows.  It sounded like he's just using this as sort of a litmus test to see what else might be able to be done or maybe just where to send me next.  He did say that he really wanted to get me some answers, so it was really nice to have someone at least make the effort like that.  He is going to call my PCP and the rheumatologist to make sure they are on board with his approach.  Still frustrating to not have any answers, but definitely feeling thankful to have a doctor that is willing to step out of his normal specialty a little bit to try to help me not get passed around quite so much.  

So it's really just wait and see game...again.  What's another month, right?
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Avatar universal
       I am so sorry that your spouse is abusive.  I was married twice and although they both were sweet at first, they both turned abusive later in the marriage.  I know how that feels.... they try so hard to make you feel that no one would ever want you and that you are unattractive and worthless.  Don't believe it!  He knows you are attractive and can't handle the fact that if you left him, someone else would want you!
     Speaking from experience!  And sweetie, you are not worthless!  Far from it.  Don't let him browbeat you into thinking you are.  He knows you aren't and is scared that someone else knows it too.
     If it comes down to it, don't be afraid to leave - I was - but I found a job and took my children with me.   Why do you keep trying?  Because, Sweetie, you are better than he is and don't want to "come down" to his level.  I never did - he accused me of being with other men and I told him, "You might be with other women, but I'll never come down to your level!  I will be faithful as long as I'm married to you!"   And I was.  Value yourself.  Remember that you are a valuable person to God.   And I like you and am praying for you.

Take care - I hope the endocrinologist is able to help you - truly.
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5848755 tn?1378323429
Just a quick update.  The final results from the bone marrow study were posted this morning (the chromosome analysis) and all was well there as too (as expected).  It's good news, but frustrating news at the same.  
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5848755 tn?1378323429
I don't think the rheumatologist I saw in July would be willing to work with me on CFS - she seemed really uninterested and dismissive (and she totally forgot about me in the exam room, which was enough to make me not want to go back).  I did do a little research last night with the group of doctors I am using (all of the specialists have been affiliated with the same hospital system - it's just easier that way since that way they all have the complete records without having to jump through hoops) and I did find one who is actually closer to me that has done research and advocacy related to chronic fatigue syndrome so if I have to go back to a rheumatologist, I'll probably see if I can get an appointment with him specifically since I know a lot of doctors don't really believe CFS even exists.  With me already second guessing myself, I just want to try to find someone that I won't need to fight with to get them to believe me.

As for thyroid, I did have my TSH level measured and it was normal, though I've considered asking my PCP to run a test on my free T3 and T4 because I know sometimes TSH is normal when there are actually underlying thyroid issues.  I also wondered about getting my cortisol levels checked too to see if maybe there could be some kind of issue with my adrenal gland since from what I've read low cortisol can cause the low grade fevers, fatigue and dizziness, though it also mentioned something about low blood pressure, which I don't have (right now it's kind of been running borderline but I suspect that's largely due to stress at the moment).  

I was actually really hoping that my issues were related to iron levels or something.  I know iron deficiency can cause the fatigue and what not so while I didn't really think it was the cause, I was hopeful - so then I would have an answer and I would get to stay with the hematologist that I actually like.  

New doctors are just such a mixed bag.  I mean, I guess I get that they see all kinds of things and some of them just don't have a lot of patience with people sometimes.  But what you said is true about PCP - they just don't do that much anymore.  If it's not in a little tiny box of "normal" issues, these PCPs just don't seem to have any clue.  I mean, I really do like my PCP but there's a relatively small set of things that she really helps with.  Suspect I'll be going back to her for more information about where I should go next.  Sometimes I feel like the doctors I am seeing just get annoyed with me because the fact that they can't diagnose me makes them feel inadequate as doctors :)  I especially got that feeling from my infectious disease doctor.  He is a pretty young guy - only a couple of years out of his fellowship - and he would always go on and on about all kinds of studies about how if fever of unknown origin (which is my "official" diagnosis right now) isn't diagnosed within "x" amount of time, that it probably won't be.  It just seemed like he was justifying it to himself why he couldn't figure it out...lol.  

I have done some looking around as you said about use of steroids in the treatment of CFS and from what I read, it sounded like generally if they are used to treat it, it's typically because the suspected cause of the chronic fatigue syndrome is adrenal malfunction, which is part of the reason I have some interest in getting my cortisol levels checked.  It sounds like if my levels are low, getting on a corticosteroid would help but when I stop it, it sounds like everything would go right back to where it was.  And if it's the cortisol levels that are an issue, I'd be interested to know what he cause of the issue is, too.  So that's why I was thinking an endocrinologist might be helpful, even if a rheumatologist would be the one to actually "diagnose" CFS.  The rheumatologist didn't even mention CFS - she just tested for some known autoimmune markers and for lupus and concluded when those came back normal that there was nothing more for her to do.  

But yes, it is good that they didn't find any kind of leukemia (which I didn't expect since I've never shown low WBC in any of my CBCs) or lymphoma.  

I've been watching what I eat more lately.  I'm still not eating the best stuff around but I'm trying to make sure I'm not overeating (because I tend to do that when I am stressed) and I'm trying to make better food decisions).  On the positive side, since I've started doing that, I've lost a few pounds :)  

I do appreciate the prayers and the support.  It does help me feel less crazy sometimes. Other times, nothing can make me feel less crazy :)  

It's just hard.  I'm married to someone who is verbally and emotionally abusive and treats me like garbage, which makes going through this all even more difficult because I really, truly have absolutely nobody.  Some days I really do wonder why I even bother trying.
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Avatar universal
        Wow... I do hope the doctors find something soon.  It seems that we can't find relief anywhere from our illnesses.
       I too have a doctor that's an oncologist/hemotologist, but I haven't seen him in a couple of years.  Mainly because I've been able to maintain my iron levels down with diet.
       Because you seem to run low-grade fevers, they probably don't think it's your thyroid causing problems.   My son-in-law used to stand and stare at the tv with the remote in his hand and couldn't remember what he was doing.... he had an overactive thyroid.  
       I guess your next move would be an endocrinologist.  At least they could check your thyroid, parathyroid, adrenals and other glands to see if there is a problem there.
       It is so frustrating to spend money going from doctor to doctor trying to find a diagnosis - hopefully a treatment or "cure".  I'm so sorry this is happening to you!  
       I have a cardiologist that I see once a year.  I have a leaky mitral valve - but it isn't bad yet.  I just need to keep my blood pressure down.
        I sincerely hope that you don't have any heart trouble on top of everything else!  Chronic Fatigue Syndrome is diagnosed by a rheumatologist.  
    See there!  Another doctor!  I do wish doctors were like in the old days - now they are all specialists and you can't expect your PCP to know much of anything.  He will check you over and send you to a specialist that he feels will be able to diagnose you.  
     It is so difficult to be a patient these days.  Gone are the days of the General Doctor who would look up in his Harrison's what he thought you had and try to treat it.  Now if you come in with a skin condition, they sometimes won't even look, they send you to a dermatologist.  
      Sorry - just venting too!!  I get so frustrated also because I've been sent to several dermatologists who practically push me out the door without a diagnosis.  Who cares that you have an itch on your back that's been bothering you for 7 years.  Scratch it! and get out!
       I wish there was something I could say or do to help you.  This is when I feel helpless!!  
     On the upside, I am glad they didn't find leukemia or anything like that.  Perhaps we should look up Chronic Fatigue and see what kind of meds they give you for that.   I do think some take steroids or corticosteroids for it. -  I can't take them as I became allergic to them.
     I am praying for you, if that's any consolation.  I don't know your real name, but I'm sure Jehovah God knows it when I pray for you.  Mostly I pray that he will strengthen and help you through this ordeal.  And I pray for a good outcome.  
     Don't despair, eventually someone will know what's wrong with you and prescribe something that helps.   Meanwhile, try to eat healthy and don't lose hope.

        Hoping for a good outcome.
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5848755 tn?1378323429
Good heavens that was long.  Sorry!
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5848755 tn?1378323429
I just finally got back to the forum - I've been sidetracked with other things (which has been a welcome distraction).

The procedure itself wasn't too bad.  He did have to make three attempts to get the bone marrow core sample and for whatever reason wasn't able to (my follow-up appointment is on Wednesday to discuss the results).  He did, however, say that the aspirate was the most important part and he had no trouble with that.  I had been reading about how excruciating painful the procedure can be and was admittedly fairly concerned, but my doctor has an excellent bedside manner.  He made sure he let me know what he was doing and gave me a heads up if something was going to hurt.  He was also extra careful to make sure he numbed everything up as much as possible, so it wasn't terribly painful.

As I mentioned earlier, I don't have my follow up to discuss the results until Wednesday afternoon, however most of the results have come back.  Again, all completely normal.  I think the only thing still outstanding are some cytogenetic tests that they had to send out to a different lab, but based on everything else, I can't imagine those will yield any diagnostically helpful information.

I'm dreading my appointment on Wednesday, for a number of reasons.  First, I really like this doctor and I had hoped that if possible, he would be the one I would get to stick with, but as he's a hematologist/oncologist and this clearly doesn't seem to fall in those categories, I'm guessing I'll be dropped again.  It's just so frustrating when you finally find a doctor that you're comfortable with and actually seems to want to help.  He had mentioned previously possibly doing a trial on some steroid drugs if the bone marrow testing came back normal I guess just to see if it helps, so we'll see where that goes I guess.  He had also mentioned in my first appointment with him something about chronic fatigue syndrome - I'm not really sure how much testing is required to rule out other things before they will consider that.

As for me, nothing much has changed.  I've been terribly exhausted still and am having a really difficult time making it through the week at work (and frankly, there are a lot of days that I just get so exhausted that I can't function).  Still having the fevers - typically hovering around 100.5, sometimes higher, sometimes lower.  Nothing has changed, no answers, no nothing.  

Part of the reason I'm dreading my follow up is because I feel like I'm going to have a breakdown.  I'm just so tired and insanely frustrated and with all of the tests coming back normal, I feel like I have very little chance of feeling any better at all in the foreseeable future.  I also feel like I have so many questions and concerns and what not and my follow up appointment is only scheduled for 15 minutes.  I don't think he would be the type to just cut me off and stop answering questions but I don't want to make him mad by taking up a ton of his time either, given that he's really been the only doctor who's even pretended to care.  I am exasperated at the thought of having to go to yet another doctor and starting all over again.  No idea where I would even go from here (assuming that the steroids that I'm guessing I'll be prescribed don't work - and while stranger things have happened, there's not really been any indication that they would work).  Seems like maybe a trip to an endocrinologist would be a good idea at that point?  I'm not sure.  I was also referred a while back by my PCP to get an EKG done.  I had it scheduled but had to cancel because they called me the day before and told me it'd be $250 and I'd just shelled out $1000 for the CT scans they did.  I just couldn't afford it at that point, so I'll probably have to try to get that done too.  I think they were just trying to rule out endocarditis with that, though, and given that all of my blood work and blood cultures were normal and I have no markers for inflammation, I'd imagine that's a long shot...and since it's a might expensive one, I figure I might as well pursue other avenues first.  

I will say that there are some lab findings that I just don't quite get.  My hemoglobin and hematocrit were good and mid-range.  My ferritin was in range, but very low (19 - which had dropped from a 23 earlier in the ordeal).  My understanding was that even though that was in the normal range, it was not at all ideal.  So I thought that when they did the iron staining on the marrow that it might reveal and issue, but the pathology report said that the staining revealed adequate iron stores.  So that got me wondering why my ferritin level is as low as it is.  I also noticed in the pathology report for the marrow studies that there were a really high percentage of promyelocytes.  While I did still have a normal percentage or matured neutrophils, it seemed odd to me that this particular number was so inflated.  From what I read online, the normal range for promyelocyte percentage is anywhere from 2-8 or so.  Mine was 18.  It just seemed unusual.  Flow cytometry didn't reveal any abnormalities, but still.  I guess I just like answers for every little oddity...

So generally, I'm really just not doing well.  Physically I'm not any better than I was when all of this started, and mentally I'm just worn out from all this running around with no answers, especially since it's really been affecting my job now too.  

I'm still crossing my fingers and hoping that maybe something in the cytogenetic testing will reveal something that the other marrow studies didn't, but I know that it's highly, highly unlikely.  I am at least glad that the hematologist warned me from the beginning not to get my hopes up that the marrow studies would lead to a diagnosis.  It's just difficult to be trying to navigate all of this by myself.  I really don't have anyone in my life that really cares much about my health and well being, so it all falls on me and when I'm just feeling so crappy all the time, sometimes it's hard to continue to put up the fight.  And all of the "normal" results just have a way of making me seriously second guess myself and feel like a complete lunatic.

Sorry for the novel.  As you might have noticed, I have a tendency to ramble :)
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Avatar universal
    Your bone marrow surgery is scheduled on the day I leave for Tucson.  i will be gone for 4 days, coming back on Sunday night.  I would be interested in knowing how it goes with you.
     Please let us know as soon as you get the results.
(We have a tendency to get attached to people on here.
Guess it's something God put into us).
         Wishing and hoping things go good for you!
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Avatar universal
    I am so sorry to hear that your doctor is going ahead with the bone marrow test.  I sincerely hope and pray that he/they find the source of your problem with this test.
     Your question was certainly legitimate.  Sorry that he answered with "gobbledygook".  
       Just wondering... I've been reading a bit about amalgam (silver) fillings.  Do you have any?  (You probably noticed that's what I've been commenting on - on the other pages)  Mercury poisoning can cause so many symptoms and problems.
         Please let me know how you are doing... I truly care.
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5848755 tn?1378323429
I spoke to the hematologist yesterday afternoon.  He did say that he wanted to go ahead with the bone marrow aspiration and biopsy (scheduled for 8/22).  I asked him what kinds of things they might find that wouldn't have already been indicated in the bloodwork and he kind of looked at me puzzled and asked me why I'd ask that.  I'm not really sure what prompted that reaction - it seemed odd to me since I think it's a legitimate question especially when he is talking about an invasive and unpleasant procedure.  I explained to him that I was just curious and he rattled off a bunch of stuff, some of which still seems like it would have been indicated in the CBC's or CT scan.  

He also told me point blank not to get my hopes up on them finding anything in the bone marrow study.  I mean, I get that, I guess since they've tested for all of the "usual suspects" so far and found nothing and they are testing for some of the more unusual things now, but still, I would have liked to be able to be a little more optimistic about the bone marrow study yielding some kind of helpful results (don't get me wrong, I appreciate his honesty...a lot...just stinks to know that you'll be going through a procedure like that and it'll most likely not be helpful at all).

He is going to confer with the infectious disease specialist to see if there's anything specific he would like to see run, but I think the ID guy is just thrilled to be rid of me, so I'm guessing he won't even give any thought to it :)

He said that if they don't find anything there, the next step will probably be to try treating me with some steroids and see how that helps things.
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Avatar universal
   Unfortunately bone marrow tests are usually to look for leukemia and other types of cancer.  I sincerely hope you don't have anything like that.

     Other bone marrow diseases have to do with not making enough white or red cells or sickle cell type diseases.  

    I would be interested in knowing what the doctors find... wishing you all the best...
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5848755 tn?1378323429
It's not really even that I'm specifically afraid of the test.  I mean, it certainly doesn't sound like much fun but I'm pretty tolerant of fairly invasive tests (not related to this, but other things in the past).  I've been seeing doctors and specialists for almost the whole seven months, so this is definitely not the first line of defense.  

I've had lots of other blood tests to test for evidence of infectious goings on and evidence of any kind of autoimmune issues and for a lot of odd kinds of diseases.  All have come back normal.  I've had probably a good 50 different blood tests to try to identify anything as a potential cause for the issues (in addition to a CT scan of pretty much my entire torso).  I only mentioned the CBC and ferritin levels as they seem most related to the need for a bone marrow aspiration and biopsy.  

I do plan to ask him what he is specifically looking to find that wouldn't have been indicated by any of the other tests that have already been done.  
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Avatar universal
     I would tell the hemotologist that I am afraid of the bone marrow test.  Ask him if there is anything else he can do instead.  There are so many blood tests that are not being done when one asks for a CBC.
     I would think a bone marrow test would be one of the last things he would recommend or suggest.
     My hemaotologist finally did a hemochromatosis test after I asked several times as my grandson has it.

     He might not like the idea, but ask him what he's looking for and if there is another way to find it.

      I don't blame you one bit.  I understand those tests are very painful.  

       Please let us know what you and your doctor decide.   Wishing you the best
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