Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Doctors cant seem to find out whats wrong with me

itsautonomicitsautonomic LouisianaPosts: 1,807
edited 01/20/2015 - 9:22 AM in Chronic Pain
I have not been back to spine health long and I come back and see people struggling with this , some have been looking for whats wrong with them for just a short while , but some are searching months or years. I figured I would give a brief medical history in terms of being diagnosed over last ten years just to support those people looking.
2004 Injured hip, doctors diagnosed bursitis and for two years I took anti-inflammatory and Aleve. 2006 years later saw new doctor because things not adding up, immediately diagnosed torn labrum in hip for which had immediate surgery and never had pain again.
2004 same injury as above I also injured my spine, I saw doctors for 2 years said nothing wrong go back to work so I did in manual labor. In 2006 saw another doctor because something not adding up, diagnosed with herniated thoracic disc at T6-7 touching cord ( actually looked back and doctor saw issue with first MRI in 2004) for which I treated up until 2010 when after a disco gram we discovered an annular tear at T5-6 for which we adjusted treatment and I have not had major issues with thoracic spine since late 2011.
In 2011 I had what is suspected to be a cord impact from neck injury. I saw doctor after doctor moving to the next when one said it’s in your head, I can’t find issue or I can’t help because something didn’t add up with all the different diagnosis I received that did not match symptoms and I continued to see doctors flying to Baltimore and finally in 2014 to Jacksonville, Fl to large teaching hospitals where I was diagnosed with autonomic disorder, small fiber neuropathy and central sensitization. All for which I am treating now and having more testing ran.

So since 2004 it has taken two years to diagnose hip, two for thoracic spine, six for annular tear and 3 years for autonomic disorder. What were the consequences for the long diagnosis that I know: I have arthritis in the hip from improper tracking with cartilage hanging joint up, I don’t know what continuing working heavy lifting with spine did but sure it wasn’t good as I suffered alot of pain everyday doing it, I suffered six years that if tear found early may have been much shorter and now with autonomic disorder, small fiber neuropathy, and central sensitization I could have stopped or halted the progression early on and been much better off with early intervention. I am hopeful my new problems will one day resolve, but it’s a long shot as of now.
I write this not to bash doctors even though I see large problems with system for those whose problems don’t jump out at doctor, but to show that so much of your own health is in your hands. If I never would have educated myself in my condition or symptoms, pushed or moved on from doctors whose diagnosis didn’t fit my symptoms I would be a man at 37 with bursitis of the hip that wont heal, a back injury that should have healed on its own in 10 years ago, and something that’s only in my head. All of which would not have been true. Keep looking and trust your instinct .
Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.


  • dilaurodilauro ConnecticutPosts: 9,859
    the identifying the root cause of he problem is not that easy.

    Its only those obvious spinal problems ( major severe sciatica, first MRI clearly shows disc problems impinging nerve roots) can be found pretty quickly.

    But many take much longer to diagnose. There are three parts of this problem;

    • - Doctor speeding up the diagnostic tests and spending more time with one patient (not all that reasonable)
      - Patient willing to go in for test after test. Need time off from work, dont like the tests, etc... this drags it out
      - Insurance companies agreeing to pay for the tests. This at times can be the largest factor in delays
    Finding a spinal problem is like a detective game. You need to provide a lot of clues, so that the detective (doctor) can
    start to investigate. Some of those clues will lead to dean ends, some will lead to more clues

    I've been in and around the medical field, doctors, nurses, hospital staff for most of my life so I've gotten to know many of them.
    Though, I am still just a lay man, computer geek and wine fanatic. It took them almost 36 months to finally diagnose my shoulders needed to be replaced. Most of us knew were looking into neck problems or more thoracic problems. All physical therapy and other treatment was geared for that.

    It was because I could no longer shake someone's hand, that one of my doctors sent me for a cortisone injection into my shoulder.
    That cleared the problem. For that point on, now after almost 3 years figuring things out, it took another 13 months to get the insurance company to approve follow on tests and eventually the surgeries

    This is just one example, but I know its not that unusual....
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Great points , I have great ins but if I didnt have a job that was flexible and shoot the funds to travel I think it may have taken so much longer to be diagnosed with the neurological disorder. The specialist I was seeing towards the end where scheduling 6 months to a year out. Thats just for consult then testing they want to do comes next then seeing them again, though could get in faster after intial consult. Its a very long process, and becomes such a more dynamic process if your are in high levels of pain. The hip was no real issue as I just moved on and it hurt but not that bad no quality of life affect other than slow down with a limp , the neurological component was like being on fire every day non stop and the fear of no diagnosis which meant no real treatment options just made things so much worse. That is when you will see yourself change, but I was damned if it was in my head.
    But I can honestly say that I give drs (that did not say in my head ) a pass for my annular tear and neurological stuff that is a hugely hard diagnosis with specialized testing and pretty rare, that said, my hip tear ( look at symptoms online and the right diagnosis pops up) and thoracic herniation should have been found by any doctor worth their salt. So while its not unusual for time to play into tough things to diagnosis , sometimes it actually is the skill of the doctor in diagnosing. These diagnosis affect so much not just the right treatment ,but disability, STD/LTD. Getting a diagnosis for something difficult is just as much based on the doctor as it is on the patient in my opinion, yes the right doctor that recognizes it finally puts the final tag on it, but how well you told your symptoms, advocated for yourself, put yourself in right hands and questioned diagnosis that seemed to be just a catch all or not fit your symtpoms is just as important. The treatment options then must come from doctor.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • I totally agree that diagnosis is so much the skill of thinking out of the box sometimes. I live in FL and applied to get into that teaching hospital in Jacksonville but they wouldn't see me. It is also hard to get a diagnosis when you cannot find one doctor to treat you for the whole picture. My neurosurgeon will not see me unless there is something obvious to cut on. I have seen several different docs, one for my shoulder, one for lower back, one for nerve pain and of course the great and mighty PM. I keep getting this crap where all the best orthos won't take any more back patients because it is so difficult to see and diagnose complicated crap. So far being treated in these little pieces of me, I have found the original cervical herniations with bone spurs and had a two level ACDF leaving one still herniated one in there which then led to a diagnosis of permanent nerve damage at root of C7 causing terrible radiating pins and needle weird feelings in both arms. ( that being diagnosed. by two different drs.). I have herniated disks in lumbar, with bone spurs and a ton of arthritis as well as DDD and degenerative arthritis in hips and pelvis with bone spurs on hip(diagnosed by another dr.) no treatment but referred to PT. Most of the diagnosis comes from whomever is reading the MRI's and CAT scans. While going to therapy, I noticed that I had a problem lifting my right arm and went to a different ortho because I didn't like the guy that saw me for my back, but the guy who I wanted to see me for my back but wasn't taking new back patients was taking new shoulder patients, so I got in to see him and was diagnosed with shoulder bone spurs and that was cutting into the rotator cuff and arthritis which was limiting range of motion. Now that I am with him for rotator cuff, he will see me for back! Maybe I will get some more complete diagnosis. Oh and my primary is testing me for RA and fibromyalgia. This doesn't seem right!
Sign In or Register to comment.