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Old Thu Mar 20, 2008, 08:18 AM
tammy72 tammy72 is offline
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Join Date: Mar 2008
Location: Stuart, Va
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Tammy with many questions

Hello,

October of 2005, I was diagnosed with myelodysplasia after having bone marrow aspiration and biopsy. Was sent to a University in North Carolina. They told me I was going to need a transplant. Then they told me they had been finding Copper Diffiency in people and that it was mimicking Myelodysplasia. They checked my copper and I had not a trace in my body, so they said they felt copper was my problem. So they started me on Copper Gluconate 2mg, 2pills 3 times aday. Copper bagan to come up slowly, very slowly. Then my blood began to come up some and my white count looked really good 8.9 and stayed that way...until now. Let me back up for a minute, before I was diagnosed with Myelodysplasia, I got Periphal Neuropathy very bad, its all over, Im knumb from knees down and hands. Alot of leg pain, some in back. They told me I got this from immune being low.

Now my blood is dropping again and the Copper is 84, so it isnt Copper's fault . So has the melodysplasia been there the whole time? Is there anyone on this forum that has a Copper Diffiency and / or Myelodysplasia? I need some advice, doctors where I live dont know what to do with me, I go back to a Hemotogist Tuesday. If there is anyone with advice, please tell me.

God Bless You,
Tammy
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Old Thu Mar 20, 2008, 07:26 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
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Have they checked you for other nutrients?

Hi Tammy,

Did they check your B12, MMA, homocystine, folate, B6 and iron levels also. If not, get them to do it. If they have, get a copy of the results. Do not settle for them telling you they are in the "normal" range. Many docs are not up to date on adequate B12 levels and peripheral neuropathy (PN). The peripheral neuropathies can be due to B vitamin deficiencies. B vitamins are crucial to blood production and DNA/RNA health. Since you've already had a copper deficiency, you need to be checked for other nutritional imbalances.

And....if your b12 is in the low-normal range, then there's a good chance you are deficient. Low Normal B12 serum levels in the presence of anemia and PN are good indicators that you need B12. Your B12 should be at least 500. You do not get PN from a low immune system. PN is a symptom of something else going on. I can give you a link to a PN forum if you're interested. I can also send you a PDF on B12 if you would like.

Do you know if you are sensitive to gluten? This could contribute to malabsorption of nutrients in your food.

My husband ended up with PN and it's a slow process to reverse it.

Marlene
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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