doctors visit-results

[Guest guest]

Hi-I went for my results from all my tests and everything came back

ok except for my ACE level was elevated in my spinal fluid. Not alot

but out of the normal range. My neuro said he does not know what I

have but also said that he has little experience with neurosarc. It's

NOT ms!! I believe that's a good thing but is it?? So, now he wants

to do an mri of my spine. He recommending that I go to ns

Hopkins, 3 hrs away. Im not keen on the whole deal. What if I go

there and still dont get any answers??

Can a elevated ace level in spinal fluid be neuro sarc?? I have

been diagnosed with sarc, without biopsy since 2000. I had it in my

medialstinal lymph nodes, left eye and have had joint and muscle

pain. The numbness in my hands ,feet and legs started this summer. I

also have double vision, vertigo and fatigue. Sound familiar??

The way he told me what my results were was interesting and

actually, kind of nice in a way. He said that, since he graduated med

school, lyme disease and hiv were discovered. He said that they still

don't know alot about so much of the body and although he's not

saying I have some rare illness, he's just not sure of what it is. I

felt at least that someone GOT IT!! Listened to me and understood

how unsettling it is to not know what is wrong, just that SOMETHING

is. Validating in a way that my soon to be ex never got.I'm not crazy

just cause I have something wrong with me that can't be put in some

cute everyday diagnosis and fit there. I sure as he** don't want,

need or deserve this crap but I refuse to feel less-than because I

have it. The doctors I work for treat me like I'm someone special

becuase they KNOW how hard some days are for me and I still show up

and work my tail off.

Sorry about the rant, I was overdue!LOL!!

Bonnie B