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What is the cause? Need help and doctors lost

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

Previous surgeries: T8/9 Posterior fusion on 6/6/2012

I have been to see an endo, rheumy, neuro, physc, 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 I am now losing my eye sight. 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!

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



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)

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!
"When I planted my pain in the field of patience, it bore the fruit of happiness" -Khalil Gibran


  • ...and while I unfortunately do not have anything concrete to offer, I just wanted to say that there is no question in my mind that you are the definition of a fighter. To be 24 and to have gone through and be dealing with all you have has got to be hard, but I can tell that you are going to keep fighting until all stones have been turned.

    I am curious if you have sought out any eastern medicine/alternative medicine possibilities for your pain management?

    And please - NO apologies - this is what this forum is for. I am hoping that there is someone who offers some real suggestions for you, but in the meantime know that this is a great place to come and discuess your issues. I have only been on here for a few short months (or less) and everyone who has responded to me has been terrific.

    I wish you well!
    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
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