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  #1  
Old Mon Jul 7, 2014, 02:11 PM
Specialk Specialk is offline
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Location: Las Vegas
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2 years, no answers

History: septic hip at age 6, chronic sinusitis, (monthly sinus or tonsil infections given antibiotics and steroids, asthma, chronic tonsillitis, thrush, daily fevers 100-101 even with Motrin and/or Tylenol...2 years ago I was admitted to ICU with WBC 0.4. No infection found, severe pharyngitis and thrush. Followed up with specialists with no conclusion. Hysterectomy last year due to endometriosis. Then March 2014 severe pharyngitis WBC 0.5 again no infection present!! I'm 36 and feel like I have the flu 24/7. Achy, can barely get up or walk in the morning due to extreme pain. Diagnosed with Celiac disease 13 years ago, did not follow diet until 2012 when diagnosed with gastroparesis (I will puke up a meal 27 hours later undigested) severe migraine/cluster headaches possible damage to vagus nerve from celiac.

WBC counts are typically 1-3 all the way up to 44 with no infection, steroids, or nupogen, but mostly below normal. So, I've been advised to stay home, away from sick people, wear a mask when going to appts.... Last hospital stay found Small malignant lesion on right kidney and ulcer.

Bone marrow report reads: hypocellular bone marrow with maturing trilineage hematopoiesis. Reduced histiocytic iron. Heterogenous B, T, and NK lymphocytes. No focal lesions found.

Returning to ucla tomorrow ( after two years of fighting to go there after having 12 specialist manage my care here with no diagnosis) for follow up but I want an idea of what I'm in for! Two years of being on edge of "will this be the fever that kills me" and I've gained 40!!! Pounds in 6 weeks and I barely eat or hold food down. I've never weighed this much in my life, avg. is 115 62" tall

Any thoughts appreciated Kellee
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  #2  
Old Mon Jul 7, 2014, 04:52 PM
triumphe64 triumphe64 is offline
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Who at UCLA?
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Mon Jul 7, 2014, 06:16 PM
Specialk Specialk is offline
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Rheumatology, Kaldas. After infectious disease, hem/on, immunology, ent, and four drs at local ICU threw up their hands.

Vegas medical sucks lol
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  #4  
Old Mon Jul 7, 2014, 08:47 PM
Chirley Chirley is offline
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My first thought with the celiac and gastroparesis is a nutritional basis. Can you post your blood test results for iron, B12, folate, zinc, copper, Vit D, Vit A etc.
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  #5  
Old Mon Jul 7, 2014, 11:11 PM
triumphe64 triumphe64 is offline
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Kellee,

We are here to help, but why did ou choose this board relating to bone marrow failure? What did your hematologists tell you?
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #6  
Old Tue Jul 8, 2014, 01:50 AM
Specialk Specialk is offline
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I chose bc I posted my Bone marrow results, and thinking someone could decode. Vit D was only one that was showing low, everything else was fine. I'll look through my chart on my ucla page and see if that's on there

My hematologist first refused to do the test. Ucla ordered and he submitted but sure let me know he was against it but rheum was not so sure. He's been knocking it down for two years, even when in ICU. I guess ucla just pressured him.
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  #7  
Old Tue Jul 8, 2014, 03:47 AM
Chirley Chirley is offline
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Ah, basically it's saying your bone marrow is a little low on cells and iron but essentially normal. The report itself is very basic and is very scant and doesn't mention particular cell lines or cytogenetics etc but the parts that are reported on are certainly nothing to worry about.

I'm pleased you're getting further input because continuing fevers and wildly fluctuating white cell counts certainly aren't normal. Hope you get some answers soon.
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  #8  
Old Tue Jul 8, 2014, 08:00 AM
Marlene Marlene is offline
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I have to second Chirley's first observation regarding Celiac's. Everything you described can be attributed to it. Sounds like you've had it for a long time and I would bet your nutritional status is no where near optimal.

Have you considered working with a good, alternative nutritionist or an integrative doctor to fix your digestive track and restore nutrients in order for your body to heal? Most doctors are not well versed in nutrition. Standard blood serum test for B12 and folate are not very accurate. Most doctors will prescribe the least bio-availabe B12 and D when patients are low. And, a low normal B12 or high B12 and folate without supplementing, is suspect and needs to be addressed. Zinc is crucial for you immune system. Your zinc, copper and iron need to be in balance.

Depending on how much damage was done, will depend on how much you can reverse. It's a slow process and can be a bit rocky on the road to recovery.

Maybe you have already addressed this, but if not, I would encourage you to explore the Celiac connection.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Tue Jul 8, 2014 at 09:32 AM.
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