[horseless722]

Hi,
as stated I am new here and this is a whole new thing for me as I am normally haunting the equestrian worlds boards. I generally do not discuss my illnesses until reciently when I was asked squarly what was wrong either on going or past that would make an educated person not be able to type OR to even see typos when they are right there in front of their face.

I call my illnesses my body's attempts to kill me as it never seems to do things half way. It has tried 3x's over the last 25yrs so yeah I got the short end of the stick when it came to family general health.

The first time my body tried to kill me was when my oldest son was 6wks old. I began having these ''spells'' which I ignored because of what I was doing at hte time I did not have time ot do much of anthing let along go to the Dr's. That and I really did not want to know. Heck I was making a run for the Olympics and had a good shot of being short listed. Turned out these ''spells'' were seizures. Partial complex focal motor they had several names to them but well that was the first time my world came to screaching halt... Turnes out all the anti seizure medications are on the IOC,USOC, FEI etc no no listing or at least they were then who knows about now I dont. I guess the powers that be did not want ot risk it.

turns out that my body just could not be satisfied with ''giving'' me seizures BUt it had to be so kind as to have the cause of them something that needed surgery. It took quite an effort on my end to ''live'' one can say as my insurance would not cover it stating the surgery dispite being thought of then prefected by the Nazi's nearly 50yrs before was to experimential ( aka to expensive).
A Neurologists with the backing of a dr who I THINK was a GYN(long story but had ot do with the Phila Naval hospital at hte time) stated ''well that thing <which we know is there> isnt causing your seizures, your seizures are all in your head." AKA your nuts woman." But seing the personality that I am I decided ot go higher than a civilian Dr who had the backing of a gyn. I went to the now closed Walter Reed Army medical center and low and behold I had the surgery and lived... Turned out I had a not so small AVM in my right temporal lobe. Which best guess on the Drs( all of them it seemed like a zoo in the OR) part I most likely wold have been dead by that Xmas if I had not pushed to gt to them.
So now I have a piece of my brain missing and a not so attractive dent in my forehead and a beautiful scar going from one end of my head to the other.. WR had ot use the traditional scaple as the govt/Dod/congress had not yet allowed them to get the laser or gamma scalple...

The 2nd attmept began about 3 1/2ishyrs ago when I began having weird burning pain in my fingers/ toes and feet.. Again I was way to busy to go to the Dr for a while. Finally after bearly a year of this pain( yeah we horse people are not only ''nuts'' but harty folks who ignore pain)I decided ot go ot the Drs to find out how to control the pain only...
Well when they were taking my blood work as it had been mmm 4 or 5 yrs since I saw a Dr dispite "orders" to the contrary I noticed it took a long time for me o fill up those tiny blood work tubes... weird but figured maybe the vacume thing was not corrct so did not think much of it....
Nope on Good Friday of that year I recieved a call from the dr's office which told me my white blood cells were elevated and they were going to refer me to a hemotologists(sp)... they did not mention anything about the red blood cells or Platelets being high also (average of 4x's higher than they should be)..
Well more blood,and after a few weeks of tests which included a bone marrow byopsy I was dx'd with Polycytehmia Vera, Essential/Primary Thrombostisis/thrombocythemia < spelling on both> depending on where your dr went to school etc, with the JAK2 mutation... Yeah Ain't I the lucky one.... So now I have these two weird forms of cancer catagorized as ''non fatal'' according to the various sites I've read but cancers the same... yippy...

the last or 3rd time which is on going until who knows was dx'd 2 days before thanksgiving..
It seems as though the artery from the surgical site from above is ''thinning'' pulling/streaching hey I was doped up with some really good drugs when they sent that cathater up my body I had a Traditional Angiogram done... And an anyurisum on the outside of my brain and its lining at the base of the brain... So I guess with this one it is just a waiting game until ''something'' happens... Which it probably has been again to busy to go to Drs. but some werd stuff been going on since Jan. I had an apt last week but had to cancel it as vehicle decided it was not going to move another inch ever... So now just waiting to get new vehicle before I go to Drs...Dr is over 20miles from me... so cant walk..

Sorry for the novel...

[Rrae]

Welcome to NT!

Your username caught my eye, as I am in the process of selling off my horses do to my chronic pain and I'm a bit sad about it
I'm so sorry for the reason that brings you here. The 'good' thing tho, is that you've found an excellent place for support, understanding and alot of good information. Unfortunately I'm not familiar with some of those diagnoses, but I'm sure others will be along who can be of more help.

I can point you to the Aneurysm forum...Here's the link to take you there:
http://neurotalk.psychcentral.com/forum7.html

I hope you can get some answers soon.
It's great to have you here!

Rae