the mouse and I; a course of leeches; weight loss/gain

[Guest guest]

Thanks Pam for feeding us some more information. I was

drawn in particular to the " Mouse with Iron Disorder... " .

I've mentioned before that I've always had an extremely high blood iron

level. My MSA symptoms started in 1985, which coincides with the

false positive AIDS test (ELISA). From that time on I was not

eligible to donate blood, which might have been the one thing keeping

symptoms at bay. My father first took me to donate blood at age 17

because I had dreadful headaches. He had awful headaches as well

and found giving a pint of blood helped considerably. He was right

it did help. I was told by amazed technicians how high my blood

iron was, they also complained my blood ran like molasses in

January. When connecting these dots af few years ago I was tested

for hemachromatosis, which it turned out I did not have. I did have

and elevated RBC and high hemaglobin. When told I had mild

polychythemia I contacted their support group, and was told that, yes,

having polycythemia could result in autonomic failure. I was

advised to have a phlebotomy and to see a blood specialist, my doctor at

that time told me it was unessesary. When my RBC dropped and more

of the neurological problems surfaced it was never entertained as a

possibility again.

The possible heriditary link is very important to me - my grandfather

dead at 52 with early onset Parkinsons, my father dead at 46, brain

tumour, my daughter has trigeminal neuralgia, and my son's psychiatric

problems have largely been abated with anti-seizure medication, his

benign tremour is also gone. I cannot make myself believe that

there is not some link.

Perhaps we could informally survey our list for hemaglobin and or

ferritin? After my looking into the iron loading diseases I have

stopped taking any supplements with iron, and am cooking less with my

iron pan, no need to add to a problem. Only the store brand of

children's natural source vitamins ($4.99 for 250) have no iron added, so

I have a colourful bunny pill on days I don't eat well//easily. If

this doctor will not let me experiment with phlebotomy, I may have find

another way to lose the excessive iron stores. (Does that not explain why

my oxygen uptake is always spectacular even with barely-there

respiration?)

After reading the article, there might still be a link and I hope taking

this to the doctor will open up some further investigation. I'm

hoping also he will order the taking of a pint, just to see what would

happen (I'll sign a waiver.) or perhaps he could get me some leeches to

take home LOL. The Canadian Blood Supply will not take my blood

without a dr's order, false positive or not (that includes giving a

donation for myself). It would give me additional peace of mind to

have this more fully looked into. If having blood drawn regularly

'might' slow down disease progress it is worth doing, I'll just make darn

sure I am thoroughly hydrated before and after.

Anyhow, thanks again Pam for keeping the brain cells going. I hope

someone will add to this any similar experiences.

For those of you living in Canada in particular, this is worth reading.

" increased Basal Ganglia Iron In Striational Degeneration: In Vivo

Estimation with Magnetic Resonance " printed in the " Canadian

Journal of Neurological Sciences " , February 1998. . The

conclusion staes: the demonstration of incteased putamenal iron content

may be a useful adjunctive investigative procedure in patients with

suspected SND. Print it out and show it to your doctor. There

is no reason our neurologists could not order this test, and is worth

doing since it can be done while you are still alive! The link:

http://www.canjneurolsci.org/25febtoc/increas.html

As to how I lost the weight, girls, I can no more explain that than the

weight gain. Had nothing to do with exercise or diet. I've

never been more stationary (may as well be a potted plant), and I eat a

diet much higher in calories than I was used to (force feed), and I know

I am losing weight again. I may be wrong but the metabolic rate is

set by the autonomic system in the brain (hypothalamus??), much like

sleep and hydration (blood volume) - which are also completely screwed up

in my case.

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com