Re: Can anyone help with this................

[Guest guest]

Yes, I actually had a nuclear scan to determine my exact red blood cell

volume (rather than a count). It was low... " idiopathic low red blood

cell volume. " In other words, they have no idea why it's low. I guess

something like epogen would be an option, but I haven't done anything

about it. As a matter of fact I regret having it done. Two nuclear

scans in a year...that can't be good.

Di

[Guest guest]

Irene

I have always been slightly anemic. When I was first showing signs of

mito that I was concerned about, I also became more anemic and had

swollen glands on the back of my head. Since they thought it could be

Hogkins lymphoma, they did a bone marrow test. They found that my bone

marrow was so packed with iron (which I had taken for several years)

that none could get out into the blood. I was told to never take iron

again. Gradually I have become less anemic and now am only borderline.

My brother, not formally diagnosed, had to have several blood

transfusions because of

> I was wondering if this is also a sign that most mito

> people have. I have been reading, and reading parts of

> e mails and it's amazing I can relate to alot of it.

> But I have not seen anything about loss of blood.

> Somehow I am loosing blood. My blood count gets low.

> Yet no visual signs of blood.Stool and urine no blood.

> I am a severe anemic in the iron department. My red

> cells are the ones, I am loosing.So if anyone has a

> problem with their blood count I would appreciate it

> if you could respond.

>

> __________________________________________________

>

[Guest guest]

--- Irene Sussmann issnowwhite54@...> wrote:

> I was wondering if this is also a sign that most

> mito

> people have. I have been reading, and reading parts

> of

> e mails and it's amazing I can relate to alot of it.

> But I have not seen anything about loss of blood.

>

Bleeding disorders are not uncommon in mito. My son

has von Willebrand's disease. My daughter and I have

undiagnosed bleeding disorders. Joanne K's (from this

list) daughters have two different bleeding disorders.

I know of many children with bleeding disorders. I

think that they are often complex and not easy to find.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

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[Guest guest]

You are not alone. 's CBC has been anything but normal for over a year

now. We know she loses some blood with cycles although we are actively treating

her bleeding disorder. But even without considering those weeks, her counts are

still all over the place (everywhere but normal). dos have a bleeding

disorder called Plasminogen Activator Inhibitor Deficiency (per every doc we've

talked to, very, very rare) and lies has a platelet aggregation defect.

lies' CBC isn't as abnormal as 's but still tends to have funny

shifts when we least expect them.

Irene Sussmann issnowwhite54@...> wrote: I was wondering if this is

also a sign that most mito

people have. I have been reading, and reading parts of

e mails and it's amazing I can relate to alot of it.

But I have not seen anything about loss of blood.

Somehow I am loosing blood. My blood count gets low.

Yet no visual signs of blood.Stool and urine no blood.

I am a severe anemic in the iron department. My red

cells are the ones, I am loosing.So if anyone has a

problem with their blood count I would appreciate it

if you could respond.

__________________________________________________

[Guest guest]

all three of my kids and I have clotting disorders