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

Hi, just read some of your post wanted to say hello & as hard as it can be dont giv up trying to find a doc who will listen not tell u its in ur head etc.Ive been there it took over 4yrs before I was diagnosed with gen rsd which hasnt been easy but Im in my 9th year & hav developed other issues along the way n most my time is spent in bed so I can relate, so can many others on here. Hang in there
~Heidi

Welcome to the site.....it's a great community of wonderful and caring people.

HeidiB is right......find another neuro. I am very unhappy with mine....I've only seen in 3 or 4 times and he just doesn't seem interested....I have small fiber neuropathy and will be going to Emory in Atlanta in March to their Neuropathy Dept. Hopefully they can give me some quality of life back.

Good luck and pls keep us posted.

Debi from Georgia

Welcome to NeuroTalk:

I wonder.... did you have B12 tested? Did you get the results and were they above 400pg/ml? Many doctors do not cover this base.

Here is a medical video on the problem, and what can happen if low B12 is ignored.
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This our my B12 thread with details:
http://neurotalk.psychcentral.com/thread85103.html

Causes may be:
1) gluten intolerance
2) chronic use of acid blocking drugs (and some others)
3) pernicious anemia (usually inherited)
4)MTHFR DNA polymorphism (mutations) which result in a failure to methylate cobalamins in the diet, and folic acid. This leads to failure of the body to activate both vitamins, so that there is a loss of active B12 ...but the others may still be floating around for a while and show up in some testing.
5) Vegan lifestyle
6) exposure to nitrous oxide anesthetic

A hint may be found in a common CBC. If you show elevations or near upper limit of the MCV...(large red cells) this is an early sign of B12 deficiency. Often doctors ignore or gloss over this sign as well.

Please come to our Neuropathy forum for further discussions and support.
http://neurotalk.psychcentral.com/forum20.html

Thanks for your reply.

B-12 was 392.

I watched that video. Wow!

It looks like my B-12 is in the normal range...is that correct?

Should my doctor do more testing?

Thanks for your help.
LaceyStrider

You are at the lowest borderline for "normal"... And you do not
know if you are declining or stable there.

Recommendations for people with neurological symptoms is to raise B12 and see if it helps.

Methylcobalamin comes in 1mg tablets, you can take those once a day on an empty stomach...and get retested in 3 months.

See if you change. Most of our members here with problems keep their levels at 1000 or above by comparison.

Most online places have this...and so does Amazon. You can choose who you prefer to use. iherb.com , swanson's, vitacost, Amazon, etc. The methyl form is the activated form and will bypass any errors in DNA you may have in methylating other B12 types.