Originally Posted by harley

i am going to ohsu in portland, oregon on monday to begin a re-evaluation of everything. side effects, med interactions, symptoms, stress, misplacement of dbs wire... yada yada yada. maybe, just maybe... they will find out how to put the puzzle of "me" together the way it is supposed to be. please, say a prayer. it has been a 26 year long journey. maybe it is the end of this road and i can say "i dont have pd and it doesnt have me." or maybe i will hear the usual, "we cant figure out what is wrong with you." i know one thing.. i am so tired of this that i will not leave that building until i get a better answer than all the years of "possible" or "atypical" or "idopathic" or ANY words that are vague and leave way too much room to throw a question mark in there.

i survived something very few people do. when i was 15 i had shingles/menangitis/encephalitis. it was acute and i will never forget that pain as long as i live. they didnt think i would make it. i wasnt supposed to. they told my parents it was not likely that i would. but I DID! and a couple years after that, i had menangitis AGAIN! and I lived through that too! and dammit, i wanna know what got fried. i know something must have.

i am not going to settle for some crappy label because they dont want to take time to look at my particulars. over ten years ago a mds told me i had an anxiety disorder not pd and i ended up attempting suicide and put in a mental hosp for ten days because of the drastic med changes. almost died there too. but i DIDNT. i had a petscan by another mds who told me i had multiple system atrophy and had about five years to live. I went to another mds who stated i needed to face my dxd of "advanced pd" and i needed to find an assisted living place to be taken care of. they have screwed with me too long. i have been on far too many different medications and suffered with far too many interactions and side effects. i have run the gammet in emotional changes due to these damn meds. i even had one of the dbs leads put in the wrong spot and after 26 years of **** ups.. I am past exhaustion. I AM MAD!

i KNOW i can be better. i know because i was! a member of this site can testify to it... cleveland clinic can testify to it, as well as dr freidman of rhode island.while there i was virtually symptom free. i wanna know what did it. because when i came back home, the symptoms returned. along with some new ones. like grand mal seizures and extremely low blood pressure and total lack of balance creating instant falls.

i am armed with ammunition in the form of 38 pages of documentation from the cleveland clinic. doctor notes, statistics, nurse observations, and bunches of stuff that point away from the pd dxd. i have been to every movement disorder clinic in the seattle area. they have nothing more to offer me. i have an ace to play at ohsu. that is where my botched dbs was done. and i just happen to have a friend in portland who introduced me to a pulitzer prize winning journalist who writes in portland. and has taken an interest in this dbs fiasco. the way i see it, that fact alone may open there eyes to me.. ME! not some stupid label.

please.. say a prayer.

please