1. < Blood Cancers & Disorders

Myelodysplastic Syndrome and Sjogren's

Posted by suetex @suetex, Feb 11 6:14pm

I have been studying MDS and SS (both of which I have) and am beginning to see an overlap. I would appreciate others input.

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vicscats | @vicscats | May 23 1:20am
In reply to @sjjs "Hello Lori, Thank you so much. I have been anemic for a very long time and..." + (show)
@sjjs

Hello Lori, Thank you so much. I have been anemic for a very long time and was told it was idiopathic. It was not until I saw a hematologist and a resultant bone marrow biopsy that it was confirmed. For about the last year, I've been taking the EPO injections every 4 weeks. The concern now is that some of my red blood cells are becoming tear-shaped. I am going to see Dr. Casey O'Connell at USC Keck on June 4th. Regarding Sjogren's, I have had dryness throughout my body for over a few decades, so we are suspect but not confirmed. I did have one blood test 2 years ago, and it was negative. I just had my rheumatologist in LA run it again and a complete autoimmune panel. I understand that a lip biopsy is the determining factor, but I am not ready yet. I have studied medicine, especially nutrition, for over 50 years, having a son, Jason, with a rare genetic metabolic condition. Our story is on fiberwater.com on the history link. My sig other has CLL and prostate cancer. Thank you again, Lori,

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What are your labs like. I have gotten. Rbc and other things like mcv type things that are off several different mc?? All low rbc is mixed up sizes. Just trying to learn

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1 reply
suetex | @suetex | May 23 9:53am

Right now I have consistantly gotten low numbers. Rbcs, Wbcs and platelets. Except monocytes, they are thru the roof. All of my cells are shaped ok for now. I suspect I'm one of those whose monocytes have taken over the duties of lymphocytes. I have not been plagued by infections. I also suspect that each of us is on a very individual journey.

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SJJS | @sjjs | May 23 11:06am
In reply to @vicscats "What are your labs like. I have gotten. Rbc and other things like mcv type things..." + (show)
@vicscats

What are your labs like. I have gotten. Rbc and other things like mcv type things that are off several different mc?? All low rbc is mixed up sizes. Just trying to learn

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Thanks! Right now, we are still figuring all this out. My numbers are low, too, especially WBC platelets and Hemoglobin. I am receiving monthly EPO injections to raise my hemoglobin. I see a hematologist but will see an MDS specialist on June 4th. I live in LA, and there is an MDS meeting in San Diego (about a 2.5-hour drive from LA) on June 29th. In my inbox this morning, I received an invitation to an MDS webinar presentation on June 8th. Where do you live?

Presently, one of my biggest concerns is my elevated copper level. Have you measured yours?
Best!

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1 reply
vicscats | @vicscats | May 23 8:06pm
In reply to @suetex "Right now I have consistantly gotten low numbers. Rbcs, Wbcs and platelets. Except monocytes, they are..." + (show)
@suetex

Right now I have consistantly gotten low numbers. Rbcs, Wbcs and platelets. Except monocytes, they are thru the roof. All of my cells are shaped ok for now. I suspect I'm one of those whose monocytes have taken over the duties of lymphocytes. I have not been plagued by infections. I also suspect that each of us is on a very individual journey.

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Very true!

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vicscats | @vicscats | May 23 8:37pm
In reply to @sjjs "Thanks! Right now, we are still figuring all this out. My numbers are low, too, especially..." + (show)
@sjjs

Thanks! Right now, we are still figuring all this out. My numbers are low, too, especially WBC platelets and Hemoglobin. I am receiving monthly EPO injections to raise my hemoglobin. I see a hematologist but will see an MDS specialist on June 4th. I live in LA, and there is an MDS meeting in San Diego (about a 2.5-hour drive from LA) on June 29th. In my inbox this morning, I received an invitation to an MDS webinar presentation on June 8th. Where do you live?

Presently, one of my biggest concerns is my elevated copper level. Have you measured yours?
Best!

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I have normal to elevated wbcs!
It’s called macrobiotic anemia. Maybe from an unknown blood source
What does elevated copper mean?
I have diabetes/ Graves’ disease/spinal arthritis/diverticulitis it’s all too tiring
I’m just hoping to figure out bleeding
Going on 2 years
So tired. Are you tired all the time?!

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slkanowitz | @slkanowitz | May 24 4:18am

Elevated copper levels can cause Wilsons disease where the excess copper gets deposited in various tissues and organs. It can cause rings in the eyes and skin color changes. It’s similar to hemochromatosis but copper is deposited rather than iron. There are medicines that chelate or remove the excess copper over time so it’s treatable but best if caught early. Tha anemia can cause significant fatigue. I hope you all get better!

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