Ive been "sick" for at least 6 years. As is typical, I have not received a proper diagnosis...However. I believe I have cracked the code. Figured out a huge clue to the problem.

I'm an RN by trade...for 90 more days...then I will let my license lapse. very very hard. another topic for later.

I was about 47 years old and had worked my whole adult life. I had been vigorous, healthy, enthusiastic, a quilter, friend, active...lived on acreage.

The problem began suddenly with three symptoms.
1) trigeminial neuralgia
2) inappropriate crying
3) depression. (Never ever depressed my whole life )

I was a home care /hospice nurse at the time. I was crying at patient's homes. Crying when frustrated with the new computer system. Cried too easily, and my crying was not in direct correlation to the minor bit of normal frustration.

Trigeminal neuralgia caused a lot of pain. Took two bottles of Costco ibuprofen before anyone would give me gabapentin.

Went to dentist/endodontist...no help multiple procedures.

Had Radio Frequency Gangleolysis surgery at OHSU. Made pain WORSE!
Pain at first was in one front lower tooth. After surgery , no relief from original pain and added insane uncontrolled pain in R teeth as well as numbness from procedure. How it can be numb and painful at the same time...HORRIBLE.

Start Narcotic/patch/gabapentin...my general doc got it under control. I have never felt dopey or drowsy.
New symptoms began.
insomnia,
Nocturnal pins and needles/numbness hands and feet.
urinary dribbling
long story of multiple come and go symptoms. All neurologic in nature.
nothing as bad as the pain which by now is controlled.

see neuro doc who does all the tests...finds nothing abnormal.
She says i am depressed and need a psych.
I say i'm depressed, but that's not my problem.

I have a sleep study and they say I have sleep apnea

I develop pill rolling L hand , mostly while reaching. I develop facial scrunching, lip pulling facial movements.

About 4 years into this I become profoundly fatigued. Still insomniac, but tired all the time. Lay down most of the day most days.

My sleep doc suggested providgil which has helped.

I am leaving out so much.

My sister is a school psych and suggests I use adderal. I ask sleep doc who wants me to ask my GP. GP said " if you have insomnia, lets cut out the providgil. "

i cut the dose in half for two weeks. I lay in bed for two weeks only to pee and take the dog out to pee. I could now see how a bedsore forms. I am scared that without pro vigil I am a very very slow, tired person unable to move and barely able to bathe and dress.

My L hip and shoulder were very painful. I felt like I couldn't stretch out. I felt like a fetal position.

Back to GP..."go back on pro vigil, and you are having a Fibro Flare."

What???

No one has ever said anything about fibro...she didn't check pressure points.
She's been my doc a long time...

i'm stunned. go home and read about fibro. the symptoms match. ok..is this it?

I run into an old hospice co-worker at the movies this week. I give her a hug and I just start crying. I couldn't stop for about a minute. i would weep as we talked. There was nothing especially poignant about the meeting or anything we spoke of. but nonetheless i boo hood. Very embarrassing.

I go home and look up the crying on the internet, i see info on PBA...pseudo Bulbar affect. That is the crying thing. I thought I was just jelly face teary. but the symptoms are so right on. I have missed church so many times because i know i will cry, I have distanced myself socially. I have cried at Safeway, Pottery Barn, and the Vet looking back this year. no reason to cry. I think I forgot my receipt and it sent me into a huge huge crying problem at the register. I cry sometimes as i'm getting my 12 year old off to school. there is nothing wrong, i just cry. it is unsettling for him and me. many more situations...just a couple examples.

The PBA is ONLY associated with neuro diagnosis. MS, Parkinsons, ALS, dementia, alzheimers, stroke.

I kept telling the neuro doc something is wrong, and she kept saying I am depressed, or that the narcotic for pain control of trigeminal neuralgia is my problem.

I'm so grateful to have found that info on PBA I took the online quiz. if you score above 12 you may have it. I scored 18.

I want to know what is my next step. I feel betrayed by my neuro doc... didn't listen...not sure what to do. I live in Eugene Or, and could travel to somewhere. So many docs in such a rush, or don't want to step on the toes of other docs in the same practice.
I need a real doc who will actually listen to me and take this seriously. I need help. Suggestions?

I'm pretty disabled by all this now...see no bright future. Just would like to know what is wrong, and treat it if possible.

Any help in finding a direction to turn would be helpful.

Thanks, LaceyStrider