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

[Guest guest]

Hi Pam.

Thanks for the encouragement. Regarding the suggested test, have no

idea when I'll get it done (if I'll get it done). My internist has

really been SLOWWWWW at getting anything done lately. I requested a

referral for j-tube a couple of months ago - when my weight once

again dropped. No follow up - no phone call - nothing. She

mentioned it during my last appointment, but we've already talked

ourselves out of this one - at least for now - only as a very last

resort - as my concerns were validated when talking with someone's

wife who had the procedure done - with similar symptoms and

diagnoses. He found no help from the procedure, as it merely forced

food into his digestive system - which then backed up back into his

stomach and had to be vented from a PEG. More discomfort, and no

significant benefit. He is now dead, and I strongly suspect he had

MSA (though this was never pursued - so we'll never know).

So, for now, I will just persist with putting in what I can, when I

can, and fighting the daily episodes of vomiting - sometimes as long

as 7 hours worth. Really hope I can get referral to another doc at

this conference who might be able to be more responsive. My

internist is nice and good - but she's just plain too busy. Even

with my wife calling her office daily - we're still not getting

anywhere.

A bit tired tonight. Fell asleep on couch, and hadn't vomited at

that point - but a few hours later awoke to the pleasantries of it -

and am still " enjoying " the residual effects. Now, it's almost too

late to retire :-)

Thanks for all you do.

> 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@j...