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Interesting compliment ( sort of ) from my doctor



  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    dilauro said:
    the hardest thing to every read in a thread is that Its not curable

    One known disease does not have a remedy, and that is osteoarthritis. But who knows someday, there will be a remedy and even a cure.

    I for one have severe osteoarthritis for which my pain doc profusely apologizes. I am positive he did nothing to cause it! I am astonished that no one has developed a cure or a treatment because of the good old, "This cannot be happening to me" philosophy.

    As for there being a cure for everything else spine related, I have to respectfully disagree. We have multiple treatments for back issues but no "cure" for many. Stepping back a bit and looking at all of medicine one will see that we have thousands of treatments but few cures. Antibiotics was one of our few "cures" but, because of mutation, antibiotics are losing us some points too now.

    Zeroing in on spines and back again we are on treatments. A cure refers to "good as new" while treatment is closer to making the best of a not so good situation. And the spine is our skeletal creation, a miracle by so many definitions, of evolutions attempt to protect our spinal cord. And when it's working well, our spine, the world is a miraculous place with few boundaries but when our spines are off we are in a painful and perilous situation.

    We could use some engineers looking for ways to "create" a new spine. As for the spinal cord itself- let's hear it for stem cell research! I would hate another human being to have to make the same life's journey I made but hopefully it soon maybe possible that spinal injuries are not life changing. Life from 8 to 48 has been tough.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • SjssnjSSjssnj Posts: 8
    edited 02/15/2015 - 7:52 AM
    Itssutonomic, I came across your post and was surprised by your diagnosis. First I'm sorry to hear that's what you have. :( (I know this is a little off topic it and I apologize if I should have used s direct message) But do you have POTS as well? And what was your initial spine injury and symptoms?
    The reason I asked is my son has POTS and it developed after an injury to his cervical spine. That's been 10 years. Recently we have consider looking into small fiber neuropathy due to new pains in his back.
    Sorry again about your diagnosis. I know how hard it can be to deal with it, you finally get an answer but no cure. :(
    Again sorry if this post is in the wrong place. I'm new and was surprised by the thread, because its a hard to diagnose condition.
    Entering Uncharted Waters
    L5-S1 Microdiscectomy & Laminectomy on 1/26/2015
    Started Physical Therapy 2/10/2015
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  • Sheila. Osteoarthritis is my nemesis too! There's a scientist who's been on English TV quite a bit apparently. (I live in USA). I've been told he states that he could now tell you if your new born baby will be plagued with osteoarthritis later in life! No cure but al least you'd know the careers, sports to avoid & the kind of life style that could help limit the damage. Approaching the condition from a genetic perspective rather than the old "Wear & Tear" is a huge step in the right direction! I was first diagnosed as a young teen before I had the chance to wear or tear anything!!!

    Science is moving fast... Did you read about the Chinese boy getting the spine generated on a 3D printer!! Fascinating!!!

    Osteoarthritis & DDD.
  • dilaurodilauro ConnecticutPosts: 13,435
    I have far less knowledge,
    And I would love to discuss this more, but not on this thread.
    Start one of your own, and I will be glad to talk things over with you.
    One of my biggest plus's is that I realize I only know some and am always willing to learn more.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 02/15/2015 - 9:10 PM
    Jellybean , if you are talking about spine I agree other than annular tears, but if you are talking about neurological stuff I totally disagree . I have all my testing ( scans, tests, blood work)from the first doctor through the teaching hospitals through portals. Their are dramatic differences in the testing and actually many early doctors did not have access to the autonomic testing, didn't do the small fiber nerve punch biopsy , didn't do special blood testing etc etc. there are many neuro disorders that average diagnosis range is 3-5 years due to bouncing between and elevating up doctor chain. The doctors at these large teaching hospitals explained the testing they did and what was different than what was done already and reasons why. I think you may be mistaken on this unless you speak if the spine .
    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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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Sjssnj, hello yes it's fine to ask me that , I love to talk about it because it's been my life for 3 years. I had a cervical injury that began most of it and the reasearch along with doctors opinions are there to say it can be caused by this. I do not have pots but a different type of autonomic dysfunction my ortho static stuff isn't that bad like in POts. If I were you I would test for small fiber neurapthy it's very simple test with punch biopsy , but one not done much by most doctors. The other way is Qsart and it's much more expensive.
    It's a very tough thing to go through as medicine that helps pain negatively affects the autonomic issues. Small fiber nerves are present in every organ and are many times cause autonomic nerves. It's a full body disorder and for me hundreds times worse pain than previous thoracic disc herniations and tears. As you might know testing for small fiber neurapthy is just coming into light and many large hospitals are studying it and many think it causes a lot if the pain in fibro, CRPS and other central pain disorders. Next 10 hrs should be interesting but the studies on what works for treating it are not there yet. The doctors have all said there is no cure unless underlying issue and treatment options are not great, this will progress, and pain management is the main portion but I am still hoping treating underlying stuff may cure me. It took me going to top of food chain docs to find all this
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I wish I had avoided those sports and activities which would help prevent the progression of OA! I think if they made a list of sports to avoid I would have been in every one!

    I will comment more later- just happy to have met another person like me.
    Nicest thing about all the meds is on a cold night and I have that warm drowsy feeling....

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 02/17/2015 - 3:18 AM
    dilauro i can do that i'll list my history after the neck injury that began all this, give my diagnosis talk about each one a bit and how relates in my case to spine injury according to doctors. i have met quite a few people who neck injuries started the issues just as with mine .
    sjssnj, i am very interested in your sons case and our similarities and hopefully his history once i start a separate thread . just the little we talked i think your son and i have a lot in common both diagnosed with an autonomic disorder at same teaching hospital and both began after neck injury.

    here is where it's at;
    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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