ok, well here it goes... had these for years but some things are progressing. my mom's a doctor, and she's getting worried. we're hoping whatever it is isn't caught too late, or that I'm just nutty haha, which I'd take over being sick!

symptoms:

*joint pain, pain in the rain. neck, hips, elbows, fingers, knees, feet/toes

*neuralgia NOS, which means no one can tell me why I have nerve pains. all over, all different types of pains and it's so hard to describe.

*my feet tingle, for years now and it's slowly spreading up my legs. my legs feel numb, and swollen but they're not.

*general weakness

*muslce spasms/twitches. my limps jerk and my ring finger on my right hand shakes when I stretch out my hand.

*my left eye doesn't move right, they said it's "like a lazy eye"

*I have foot drop, and walk funny. I step high or something cuz if I don't my feet drag. I also seem to walk/stand with my feet pointing outward to stable myself (I've looked around at other people, and no one else seems to be doing these things, so I dunno if it's a problem or not)

*I lose my balance often. I've been called a drunk so many times I've lost count. I'm very clumsy, always dropping things and running into walls when turning a corner, etc.

*my memory is horrible, short and long

*people have trouble understanding what I say

*I have trouble hearing (although this could be related to the TMJ surgeries I've had when I broke my jaw)

*my eyes are BAD. randomly, I'll have double vision in one eye. I have blurry vision that comes on like a stare. very hard to explain. I've seen eye doctors 3 times in one month because they were all puzzled as to why I could see one line for a second, then it all goes blurry. one doctor would tell me to come back to see a better doctor and so on. I got no answers. poor night vision

*problem with depth perception, if this is even possible.

*I've had a problem with black outs, head rushes, drop in blood pressure upon standing since I was an early teen but it has now since been getting worse. my hearing goes out, my sight goes black, and I bend over to grab my head because of the pressure/throbbing sound (like a pulse) which leaves me with a headache. I get mini ones by turning my head, rolling over in bed, stretching, even when sitting.

*I'm always cold, even in hot weather. my temp is always low, and I'm always being tested for thyroid problems but nothing ever shows up. my limbs are ice cold and my skin is always (since birth) been mottled (more blue when cold, red when exercising)

**the list goes on. basically the pain I can deal with, the other stuff like the walking and the blackouts are bothersome. I also don't like being seen "as a drunk" when I never drink alcohol.


If you could please list tests that I should consider, it would be much appreciated, but I dunno what more I can do other than repeat the ones I've already had (I've had just about every test, but a tilt table test which I may need at least for the blackouts I guess.


thanks.


oh, and I'm 22. no family history, sorry. 115lbs 5'7'


**list of tests I had with my neuro work-up. all normal or whatever was found I was told couldn't cause any of my symptoms, also told I didn't have MS or any neurological disease and I'll share lab values:

ANA ELISA SCREEN - NEGATIVE

SEDIMENTATION RATE - 6

CBC/DIFF - normal

RHEUMATOID FACTOR - 7

TSH - 3.05

T4, FREE - 1.08

CORTISOL - 23.1

CK - 61

VITAMIN B12 - 690

FOLIC ACID - 12

COMPR METAB PANEL - normal, BILIRUBIN, TOTAL low, but that's normal right?

PORPHOBILINOGEN UR - unsure

PORPHYRINS, QUAL. - unsure

ROUTINE URINALYSIS - probably had a UTI but no one ever called me about my test results (I get results online)

RPR - NONREACTIVE

LYME G/M AB and - unsure

LYME WESTERN BLOT - unsure

HIV-1 HIV-2 AB - negative

HEAVY METALS 24HR UR - unsure

EPG, SERUM PROTEIN
PROTEIN 7.9 6.0-8.3 g/dL
ALBUMIN 4.20 3.3-4.4 g/dL
ALPHA 1 0.19 0.1-0.3 g/dL
ALPHA 2 1.12 0.6-1.0 g/dL H
BETA 0.94 0.8-1.3 g/dL
GAMMA 1.46
--INTERPRETATION: AN INCREASED ALPHA 2 GLOBULIN FRACTION IS PRESENT.THIS FINDING MAY BE SEEN IN ASSOCIATION WITH CHRONIC INFLAMMATION or NEPHROTIC SYNDROME

IMMUNOGLOBULIN QUANT
IGG 1083 716-1554 mg/dL
IGA 140 66-344 mg/dL
IGM 190 46-208 mg/dL

IMMUNOFIXATION - unsure

BENCE JONES PROTEIN - unsure

EMG, 3 EXTREMITIES - normal, I guess

EEG SLEEP & AWAKE - haven't done this test

BONE SCAN WHOLE BODY - unsure

SLEEP STUDY - didn't sleep, go figure.

MR-BRAIN WITH & WITHOUT CONTRA (repeat within one year) - unsure, besides benign things on my head

SKULL <4 VIEWS - unsure


**unsure means these labs aren't available online

I hope someone can help me. thanks again!

edit:

forgot something, more will come to me I'm sure. most of these are so vague that I try to forget about them.

lately, last 6 months or so, I get this feeling like I'm dizzy. it's very slight though. I feel like I'm moving, or whatever I'm looking at is moving, and sometimes I just flat out feel like I'm spinning