Trying to get to the cause of my health problems, not sure what to do next

Hello, I am not even sure if this is the best place for me to ask this but I am just not sure where else to go from here.  I have had a very long, confusing, and complex medical case for the last 12 years.  I have seen many many different doctors and had just about every test known to western medicine.  Sorry, I am going to try to explain it the best I can while using the least amount of words and still giving you the info you need.

About me:
24 year old female, 5'5, 145lbs
current dx: DDD (T2-6, T2-9, T10-12, L4-6), herniations, osteophytes, schmorls nodes, stenosis, improperly healed compression fractures at T7 and T12 (25% height reduction), bilateral ulnar nerve deg., Occipital neuralgia, Optic Neuritis, Osteopenia, High Vit D deficiency, hemiplegic migraines, TMJ/TMD, heart palpitations (PVCA), clonus, photosensitivity, neuropathy, muscle spasm
Other symptoms:
numbness and tingling in all 4 limbs, lack of reflex response in both legs from the knee down and a toe-up babinski response on my right foot.  Bilateral ulnar nerve degradation, worse in the right; neurologist believes it is from my back but my surgeon believes it is NOT from my back.  Migraines and photosensitivity to the point of needing tinted glasses around ANY artificial or bright lights.  Noticeable weakness in left leg and right arm.  Balance problems, mostly stemming from my left leg and back pain.

Previous surgeries:
T8/9 Posterior fusion on 6/6/2012
Right wrist carpel tunnel repair and TFCC tear debridement 10/2010
Exploratory Abdominal Lap-Negative 8/2008

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[MrCharlezMom]

I have been to see an endo, rheumy, neuro, psych, infectious disease, and pain doc and no one has been able to pin down what is going on, but they all agree that something is.  I started to have pain and get really sick often when I hit puberty at 13.  Even before that, I had a lot of fractures, sprains and strains, and some dislocations...all of which was just chalked to being a tomboy.  At 18 when I fractured my spine, they did a DEXA scan to find the Osteopenia and brittle thick bones (but apparently not brittle enough to be considered a disease process).  From then on everything has gone down-hill with my health.

A lot of severe kidney infections, temporary paralysis from hemiplegic migraines, lots and lots of chronic back pain, and wear sunglasses all the time from my photosensitivity and have lost all color in both eyes.  My back pain has been my main focus and when it comes to treatments and medications, you name it I have tried it.  At the worst point, I was on 14 different scripts and a total of 30mg of Dilaudid a day.  Actually, this recent surgery has helped me improve my mobility a lot...I am just now waiting for the pain to subside.  I also recently added a service dog to my life and I cannot explain to you how much he has changed my life for the better!

[MrCharlezMom]

Current Medication:
Vicodin ES 7.5/300 3x
Vit D3 8,000mg
Calcium 2,000mg
Toporol XL 25mg
Zomig -as needed-
Lidoderm patches
Marijuana 2-3g

DME:
Tens
AVD/Biofeedback
Mobility Service Dog

MS, lupus, lymes, arthritis, Parkinson’s, tumors, cancer, and other common diseases have been ruled out and tested over and over throughout the past few years.  Even though the tests do not come back positive for these diseases, they are not negative either.  I have had a slightly elevated white blood cell count and low neurtraphil on every blood test.  Also, Cushing’s disease was suspected (and diagnosed for 3 months) because of a very high blood cortisol level, but when I flew to Mayo to see the specialists he felt it was only high because I have been in so much pain for years and years. (Saliva test was low)

[MrCharlezMom]

I am now completely disabled (legally I mean) and most days are not able to leave the house.  In the past 4 months since surgery, my mobility has improved greatly though and I walk every day.  I have also recently lost about 60lbs in the course of about 5 months, so that makes it a lot easier to move and "exercise".  

What I am looking for now is the root cause of this.  All of my doctors agree that the DDD that I have currently is more than just what would happen after the type of injury I had.  I also continue to herniate my discs during odd and simple tasks like cleaning the dishes or brushing my hair.  I just don’t know where else to go or what other type of doctor I should seek out for help.  Things continue to get worse but there is only so much the kind pain management doc that I see can do for me.  Any help or suggestions at all would really be appreciated.  If you made it this far and read all of that, you are amazing and very kind.  I’m sorry if any of this is a repeat of things you have discussed before, I really couldn’t find anything else on the forum that matched what I am looking for.  Thank you!

[Jane516]

Wow!  You've explained exactly the same situation/symptom/disabilities that I have and to a much greater extent than I ever could ... even ironically seemed to outrule diseases that my symptoms also mimic.  Only real differences to also help to rule-out or in the causes or in what our condition really is ... that although I am also somewhat "big-boned" and was a "Tom Boy".  I never broke a bone in my life and had very few sprains and strains.  I had birthed 5 children, had always moved fast, worked hard and always "considered" healthy - but never felt healthy after my first menstral cycle and then on very very crampy, thick & clotty.  The only real drugs I've taken in my past were diet pills to release the feeling of chronic fatigue.  Now 51, disabled (legally) and my bones & body feel like I was a construction worker or something.  In 2007 had my first surgery to remove a Arthritic growth wrapped around my spinal cord at the base of my neck.   It FINALLY found from an MRI and almost paralysed me from the neck down (but I believe this growth was just another symptom).  HELP US SOMEONE!!