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Doctors cant seem to find out whats wrong with me

itsautonomicitsautonomic LouisianaPosts: 2,561
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.
1.
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.
2.
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.
3.
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.
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Comments

  • dilaurodilauro ConnecticutPosts: 13,526
    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 Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    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.
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  • 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!
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Well today I think the circle was finally closed for me in terms of diagnosis, I redid my tilt table test that I initially had done a couple of years ago that revealed the first key in finding out what was wrong with my body.  It is called a tilt table test and it basically takes a baseline lying down in many areas of the central nervous system and heart function and compares it to a tilted positioning.  People with autonomic dysfunction have most severe issues when tilted.

    Just a small flashback to my issue, I had what is now known as spinal cord injury and it damaged my central nervous system.  I had never dealt with anxiety to a large extent, never had a panic attack prior to all of this and never experienced a lessening of cognitive abilities or pain at the level it is at ( among many other things) prior to this injury even though I did deal with a level of depression and pain from my thoracic issues prior.

    I have had a ton of diagnosis's over the last two years and most I believe have some part to play and are interrelated , so do my doctors.  There is a lot of carryover in neurological issues.

    So the results today show I progressed from mild to moderate ( I believe I was moderate entire time, this test had a doctor doing it not a technician and technology may have gotten better) in my autonomic dysfunction.  It showed an almost 35% decrease in the volume of blood pumped when I was tilted, a severe sympathetic dominance and a compensation by my body to deal with this ( imagine a constant shot of adrenaline, that is how I showed up on testing), but the two most telling things for me is that I had a huge loss of circulation to my brain upon tilting and also my legs became ishemic ( essentially I lost blood flow due to improper vasoconstriction and this is essentially perpetuating nerve damage and preventing any healing).

    I was put on several medications, now have to follow a meal plan and exercise program.  I am happy even though the results are not good, because there is a plan and a potential light at the end of the tunnel. But most importantly the doctor took the time to show me the testing and explain how it relates to my symptoms.  I did not need the testing to do anything other than confirm what I already felt and complained about.

    It has been such a long road and isn't remotely close to being done. The heartbreaking part is that every diagnosis I have is only putting a name on what I felt long before doctors pinpointed it, but I love my team of doctors now and they know me and we have a good relationship.  But I cannot end this without saying for those like myself that know something isn't right and are still looking , I hope you have the resources to fight and not stop looking as I did.  Those resources and the belief in what my body says are all I really needed in the end.  For those doctors who choose to focus more on proving someone wrong and suggesting its in their head than supporting them to find the root cause I say I defiently dare them to ever question what I say again regarding what I feel in my own body.  I have a team of the best doctors and the most specialized testing documenting and proving everything I say in the present and said in the past is and was true and now validated. I feel sorry for you ever doubting me, what you may have learned and what lives you might have saved are wasted because you choose to doubt rather than believe.  It may have taken almost 6 years , but for what little it means in the patient vs. unhelpful doctor struggle , I won and you lost.  

    There is always a reason, without exception, so do not stop fighting.


    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.
  • SavageSavage United StatesPosts: 7,385
    Hi Aaron!
    It is so good to hear this update from you!  I am very happy for you!
    And you sharing your story is so very encouraging!

    I wish you the best with your learning about your meal plans and exercise programs...and for your continued journey
    to the "light at the end of the tunnel!"
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Thanks Sue.  The news wasn't what I hoped for ,but it did offer a backdoor sort of hope.

    The best part of it all was that I had a doctor throughout the test taking all my symptoms, and explaining exactly what was going on as the monitor was measuring/recording my bodies reaction.  I saw it as it happened and got the explanation immediately so it was 100 percent clear for a laymen like myself.  Very devestating, but very interesting at the same time .  But again it just put a name or picture that explained what I have felt for years.  
    That should always be the dr / patient relationship , we feels something isn't right the doctor works based off what we feel to solve the puzzle and put a name along with it so we can have a treatment.  Just a totally different experience now for me, rather than work to disprove me as it felt so many times early on it's all about validating what I am feeling with science.  It's a group effort now and I couldn't be more greatful to my Dr team they believed me from the start.
    Its also very important to realize a doctor cannot diagnose what they do not understand so at times moving on even if Dr is trying to help is the best move .  Elevate the problem.

    I think the worst part of it all was this is a pediatric center for autonomic dysfunction that rarely takes adults (the room had cartoons on wall ) , there were babies and adolescents with same things in rooms next to me.  I've seen kids with cancer now kids with autonomic/neurological problems , heartbreaking doesn't even come close.

    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.
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