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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Sat Jul 2, 2016, 11:44 PM
NMRunner NMRunner is offline
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Can you have a hematological problem and a normal CBC?

Can you have a hematological problem and a normal CBC?

Back in 2005, I was diagnosed with MAA. After a few years, my counts started slowly climbing towards normal, reaching nearly normal perhaps last year, but fairly close to normal over the past ~4 years. I was also told in 2006 that I had a 25% 13q deletion and 1% PNH clone in my granulocytes. Last year, the PNH clone was granulocytic (5.3%) and monocytic (9.9%). So, still quite small.

Over the past year, I have had various GI symptoms (which were mostly alleviated by avoiding gluten). However, I still have nausea and moderate pain/discomfort in the upper left region of my abdomen (under the rib). In fact, this area around my abdomen is visibly swollen (a bit). My exercise capacity is severely reduced. Last year, I ran the Boston Marathon and various other races; over the past couple weeks I've barely been able to jog, but the decline has been present for several months.

My CBC is normal.
In Jan and Feb, I had an ultrasound, CT scan, endoscopy, and colonoscopy, which were all normal. (Yet again, the left upper quadrant of my abdomen is now visibly swollen -- that discomfort has definitely increased over the past few months).

(It is surprisingly difficult to get a doctor's appointment in NM. I keep getting put in a 1-2 month long queue. I waited 1.5 months to see an internist in Jan who requested the tests, but there is no follow-up.)

I originally assumed this was a GI problem (given the normal CBC), but is it possible at all that this is hematological...despite the normal CBC?

Thanks!
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  #2  
Old Sun Jul 3, 2016, 03:35 AM
DanL DanL is offline
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The quick answer to your question is yes, it is possible. Many patients who are being treated for MDS for example have normal blood counts, but abnormally shaped cells, so they still have MDS, but they may be asymptomatic due to having normal counts.

Blood diseases very rarely disappear on their own and eventually tend to get worse. My disease held extremely stable for about 4 years. Aside from bruising, everything else looked normal. My CBC looked virtually unchanged from week to week, month to month, even year to year. Eventually, the MDS changed and became more aggressive, requiring transplant in hopes of a cure.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Sun Jul 3, 2016, 09:28 AM
NMRunner NMRunner is offline
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Thanks for your reply.

In 2005, I saw a MDS specialist, who ruled out MDS. My platelets were ~20,000 at the lowest and are now 134,000. My hgb was ~8 at the lowest and is now 13. ANC was 600 and hit normal for the first time last year. The lowest values were back in 2006 (with some dips in 2007 and one in 2010), but overall everything steadily climbed and I have been completely asymptomatic for the past ~5 years.
I was being monitored by a good hematologist when I lived in IL; I moved (graduated) ~3.5 years ago and NM appears to be a different world in terms of access to medical care.

(Sorry to hear your story. Did you get a transplant? I hope things are working out for you).
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  #4  
Old Sun Jul 3, 2016, 11:17 AM
Neil Cuadra Neil Cuadra is offline
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NMRunner,

How frustrating to be unable to get an explanation, or even appointments!

Irritable bowel syndrome can explain abdominal swelling, but I presume that the colonoscopy ruled that out.

Have you asked the doctor about celiac disease? It could explain your swollen abdomen and nausea, especially since you alleviated some GI symptoms by avoiding gluten before.

Bone marrow diseases can evolve, and they can also avoid detection, so your evaluation in 2005 may not be the final word. It may be time for an updated bone marrow biopsy.
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  #5  
Old Sun Jul 3, 2016, 11:44 AM
Hopeful Hopeful is offline
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Hi NMRunner,

You may want to give the kind nurses (Olga and Barbara) at NIH in Maryland a call. They may be interested in seeing you as you have an expanding PNH clone and 13q deletion. The consultation is free and could provide you with valuable insight into what is going on. You may be able to get an appointment there faster than back home

Are you seeing a GI doctor locally? For the GI issues, another possibility is pancreatic insufficiency. I had pain in upper left quadrant under my ribs as a symptom.

Good luck and congratulations on the recovering counts!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Sun Jul 3, 2016, 12:19 PM
NMRunner NMRunner is offline
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I got 2 referrals for a supposedly good GI center in Albuquerque, yet they claim I am ineligible for an appointment until next year because I've been lucky enough to have the endoscopy/colonoscopy this year. My other options in the state were for August and September appointments, so I have one scheduled in mid-August. Unfortunately, I fear that this person, like the person who performed the endoscopy/colonoscopy, is really a surgeon who performs these procedures and rather than an appropriate consultant.

Neil -- Regarding celiacs, the reduction in exercise capacity and swelling under the left rib happened after carefully avoiding gluten and soy. (I haven't completely excluded gluten exposure in that I will eat out if traveling). I have discussed celiacs with doctors at walk-in clinics -- they were kind and tried to be helpful, but recommended testing out diets that I fear would not only distract from the cause of my problems, but possibly make things worse. My BMI is ~16.5. I don't want to lose weight, and don't think, say, avoiding cherries because they are a high FODMAP food will solve my issues. I really have no GI issues, except nausea, if I avoid gluten/wheat/soy. Thanks -- I believe you're right about getting another BMB. I saw the local hematologist last year in August; he concluded that I probably don't need a hematologist and that the PNH result "is probably fine". Then he moved out of the state and is probably now living on a desert island Kidding -- but he did move.

Yes, my recovering counts were great and lucky. A few years after the diagnosis, I was able to resume racing, and have run many marathons and ultramarathons since then. Overall, it's hard to complain. I guess my new problems are now interfering with work (bad reactions from foods, e.g., eating gluten free pizza was a terrible idea, the flu shot really knocked me out, ab pain) and racing seems out of the question.

Hopeful -- How were you diagnosed with pancreatic insufficiency?
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  #7  
Old Tue Jul 5, 2016, 09:25 PM
Cheryl C Cheryl C is offline
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Hi NMRunner - have you looked at http://www.healthline.com/health/acu...itis#Overview1 ? I'm surprised that your GP can't be more helpful, with such specific abdominal symptoms.
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  #8  
Old Wed Jul 6, 2016, 12:18 AM
Hopeful Hopeful is offline
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Hi NMRunner,

I tested positive for fat malabsorption. The doctors couldn't determine the cause of it and decided to try pancreatic enzymes just to see if that would help. I noticed the positive effects within 1-2 weeks.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #9  
Old Wed Jul 6, 2016, 09:16 AM
NMRunner NMRunner is offline
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Thanks.
Cheryl C - Amylase and lipase were both normal. Scans were normal.
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  #10  
Old Sat Jul 9, 2016, 01:12 AM
Hopeful Hopeful is offline
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NMRunner,

My amylase and lipase were both normal. These tests can be inconclusive.

Did you do the 72-hour fecal fat test? Not a fun test, but it is the gold-standard for fat malabsorption issues.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #11  
Old Mon Jul 11, 2016, 11:40 PM
NMRunner NMRunner is offline
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Hi Hopeful,

Interesting. Thanks for the information. It's quite helpful.
No, I have not done any fecal tests. Everyone I've seen really has no idea what to do.

For the past week, there has been visible swelling in a spot on my upper left abdomen (right under the diaphragm). The swelling increases after exercise. It can be quite painful in the late afternoon/evening. I went to yet another walk-in clinic and saw yet another nurse. She was quite helpful, and ordered an MRI that revealed fluid in that area of unknown etiology. (Everything else was normal).

So, I have a pocket of fluid there and somehow still can't get a doctor's appointment for over a month. Sigh.

My CBC is still pretty good, but not as good as 1 month ago. Hgb went from 13.5 to 11.8. WBC from normal down to 2500. PLT down from 135000 to 116000. Esinophils at 7%. ANC from 1600 to 800. ovalocytes. I'm NOT complaining. I know most people here have worse and so have I, but this is the most abnormal in ~4 years. It is difficult for me to believe that the swelling, food sensitivity, and changes in CBC are not related (?)
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  #12  
Old Tue Jul 12, 2016, 10:35 AM
bailie bailie is offline
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Has anyone mentioned anything about your spleen?
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  #13  
Old Wed Jul 13, 2016, 02:02 AM
NMRunner NMRunner is offline
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Yes. My spleen size looks normal in the ultrasound, CT scan, and MRI.
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  #14  
Old Sun Jul 31, 2016, 12:35 PM
NMRunner NMRunner is offline
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My legs are very sore -- I've spent the weekend icing. I don't think that icing helps, but I need to try something. My recovery rate from light exercise has become quite poor again, like back when I was first diagnosed in 2005-2006 when my counts were low. (However, now, they aren't that low). At the time, I was told that the muscle soreness was unrelated to AA, but when my counts started to improve over the years, it was clear that this was a symptom.

Is this a common symptom? Does anyone know the source? (My hgb is not that low, ~ 11). The problem is not simply magnesium or calcium, as supplementation hasn't helped.

I've tried searching the forums. There are a few references to muscle soreness, but the cause is unclear.
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