NIH study on anemia (>Pam, but others might enjoy reading this)

[Guest guest]

Hi Pam.

Really didn't expect the response I got when I wrote the author of

the article you referenced me to over the weekend.

Very first thing this morning, I had the following email awaiting

me. Thought you would enjoy this, and am including it in it's

entirety, as it might benefit someone else here.

Not sure how I'm going to do at getting my internist to listen

though... She still hasn't gotten me in for those PET and MRI

studies. Her office is balking. I leave Thursday, and will be gone

3 of the next 4 weeks, but... there seems little I can do. She is

my greatest medical supporter at this time. She's just overwhelmed.

I am hoping I can get a minute with Dr. on this weekend and

eventually get an appointment with him. Perhaps that would alleviate

some of the medical appointment problems I've had on getting tests or

someone to listen.

Anyway, here is the email:

--------------------------------------

Dear , With your diagnosis and high ferritin levels, we would

like to

make an immortalized lymphocyte cell line and check it for mutations

in the

IRP2 gene. We are very interested in following this up. Please have

your

doctor write me. I will be away the rest of this week, but around the

next

two. I am sorry about your illness, but from our point of view, your

story

is very interesting.

Regards.

Tracey Rouault

> ----------

> From: rehoboth

> Sent: Saturday, September 7, 2002 1:01 AM

> To: Rouault, Tracey (NICHD)

> Subject: NIH cited Iron study

>

> Hi Dr. Rouault.

>

> I know your paper on the NIH site said to have my physician contact

you

> via email, but I wanted to check first to see if you were still

running

> the study cited in January of 2001, or if it was completed.

>

> If it is still ongoing, and you need a subject, I have been

diagnosed at

> Mayo with autonomic neuropathy. MSA is also suspected (but as you

know

> cannot be proven until autopsy).

>

> Your study intrigued me - and will my internist as well - as I have

many

> blood abnormalities, which none can explain. For example, the docs

in

> Tulsa, and then at Mayo, all agreed that I appear to have " Anemia of

> Chronic Disease " - but added " but we don't know what the Chronic

Disease

> is in your case. "

>

> I seem to fit the bill. My iron level was fine @ 70. However, my

Total

> Iron Binding Capacity was low at 236. Interestingly, my Ferritin

was high

> at 340. If I understand your paper correctly, this fits what might

be

> expected of PD, MSA, or any of the other PD+ diseases.

>

> Thank you for your time, and direction. If there are additional

articles

> that I, or my internist need to be made aware, your assistance

would be

> greatly appreciated.

>

> FYI: My Hemoglobin has also been low. Mayo report cites it at

12.8.

> Hematocrit was 37.1 Erythrocytes were low as well at 4.14, and my

> Absolute Reticulocytes were low at 28.3 My RBC was 4.04

>

> On other reports, my platelets have been significantly low, and my

WBC has

> been recorded as low as 2.8

>

> Other test results have been all over the place. For example, my

monocyte

> count has been nearly double the upper limit, but while at Mayo -

it was

> almost out of range on the lower limit. For the most part, I have

just

> attributed the abnormalities to my autonomic nervous system having

> difficulties regulating everything. But, perhaps at least some of

this

> can be explained by a more reasonable theory?

>

> If additional information would be beneficial, please just ask.

>

> Sincerely,

>

> E. Nandico, Jr.

> P.O. Box 450062

> Grove, OK 74345-0062

>

> Email: rehoboth@...

[Guest guest]

This is great ! In case others missed what we were talking about, here

is the NIH reference again.

Mouse with Iron Disorder Offers Clues to Parkinson's, Similar Diseases

http://www.nih.gov/news/pr/jan2001/nichd-30.htm

Hugs,

Pam

NIH cited Iron study

> >

> > Hi Dr. Rouault.

> >

> > I know your paper on the NIH site said to have my physician contact

> you

> > via email, but I wanted to check first to see if you were still

> running

> > the study cited in January of 2001, or if it was completed.

> >

> > If it is still ongoing, and you need a subject, I have been

> diagnosed at

> > Mayo with autonomic neuropathy. MSA is also suspected (but as you

> know

> > cannot be proven until autopsy).

> >

> > Your study intrigued me - and will my internist as well - as I have

> many

> > blood abnormalities, which none can explain. For example, the docs

> in

> > Tulsa, and then at Mayo, all agreed that I appear to have " Anemia of

> > Chronic Disease " - but added " but we don't know what the Chronic

> Disease

> > is in your case. "

> >

> > I seem to fit the bill. My iron level was fine @ 70. However, my

> Total

> > Iron Binding Capacity was low at 236. Interestingly, my Ferritin

> was high

> > at 340. If I understand your paper correctly, this fits what might

> be

> > expected of PD, MSA, or any of the other PD+ diseases.

> >

> > Thank you for your time, and direction. If there are additional

> articles

> > that I, or my internist need to be made aware, your assistance

> would be

> > greatly appreciated.

> >

> > FYI: My Hemoglobin has also been low. Mayo report cites it at

> 12.8.

> > Hematocrit was 37.1 Erythrocytes were low as well at 4.14, and my

> > Absolute Reticulocytes were low at 28.3 My RBC was 4.04

> >

> > On other reports, my platelets have been significantly low, and my

> WBC has

> > been recorded as low as 2.8

> >

> > Other test results have been all over the place. For example, my

> monocyte

> > count has been nearly double the upper limit, but while at Mayo -

> it was

> > almost out of range on the lower limit. For the most part, I have

> just

> > attributed the abnormalities to my autonomic nervous system having

> > difficulties regulating everything. But, perhaps at least some of

> this

> > can be explained by a more reasonable theory?

> >

> > If additional information would be beneficial, please just ask.

> >

> > Sincerely,

> >

> > E. Nandico, Jr.

> > P.O. Box 450062

> > Grove, OK 74345-0062

> >

> > Email: rehoboth@...