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Chronic issues with scoliosis and neuropathy

 I am 26 years old. I have genetic scoliosis caused by a birth defect in my l4 and l5 vertabre where it developed uneavenly as i grew. I didn't learn about my scoliosis being genetic until recently. I have had chronic pain for 7 years and neuropathy for 5 years. For the past 5 years my mobility has worsened and i need assistance walking with a cane. I have also had increasing joint pain in the past year, so my gp ran some blood tests to see if i have an autoimmune disease such as ms or rhumetoid arthritis. The blood work was negative. My gp prescribed me non opioid pain killers and nerve blockers such as celebrex and amitryptaline. They ease my pain enough for me to function on a day to day basis. Unfortunatly it seems that they are not working as well as they used to and i am running out of options for non opioid pain relievers. I was on gabapentin 800mh 3 times a day but had an incident last year where i had stroke symptoms and went to the er. i ended up staying in the hospital for two days. I am hoping someone can help me considering neither me nor my gp know why i am having these symptoms. I will go into further detail in a later paragraph.  I dont have heath insurance at this time so i have been paying out of pocket for my dr visits.  I also need to bring up that i live in alabama and the heathcare here is pretty bad unless you have a lot of money. I have just recently found a job i can do and i am currently going to school to persue a teaching career. I figured i can still teach from a wheelchair if i have to.

     Starting from when i first started having pain in 2011, it was mainly muscle pain like i had constantly pulled a muscle. that was when i was told i had scoliosis.  I was perscribed mild pain relievers and told to follow up with a physician. I went to a neurologist and i was told to try physical therapy. I need to say that at this point my curves in my spine were 25 thoracic and 20 degrees lumbar. I did physical therapy and learned how to balance myself better. I did not show any nerve damage and all my reflexes were normal. I also went to a chiropractor and recieved cortisone shots in my back. It releaved a good portion of my pain for a few hours.

    In 2012 tpward the end of the year I saw a spine dr and was told my curveture in my spine increased to 28 thoracic and my lumbar had remained the same. I wore a back brace and was able to work for 3  months.  I took mainly muscle relaxers and was diagnosed with neuropathy. my spine dr ran tests and i found out i had carpal tunnel in my right wrist but there wasnt much else going on.

  I was unable to visit a dr untill 2014. I saw a dr and had found out my lumbar curvature was almost normal but my thoracic had increased to 35. the neuropathy was worse and i was prescribed neurontin and muscle relaxers. 

  In early 2016 my thoracic had increased to about 40 degrees and my lower back went back to 25.  I saw a neurologist later on that year and he increased my neurontin to 2400 mg a day. In july i went to the er at the urging of relatives for stroke symptoms. before that incident my right side gradually became more weak. The er released me with a diagnosis saying it was my scoliosis causing my symptoms. a month before that i was forced to have to start walking with a cane. when i left the hospital i requested a copy of my ct scan and it showed i had a dense  artery on the right side and and an artifact on the left side. i was prone to falls and mobility issues have worsened since then.

  When I started going to my gp last year, he did the reflex tests and was found i have decreased mobility in my left leg and right arm . When i get bad flare ups the whole right side of my face droops and i cannot feel hardly anything on the right side of my body. i have lost strength and some muscle in my right arm and leg. when he did the reflex in my right foot and there was little response.  I have troubles walking large distances like at the grocery store without some form of help on a normal day. Some days i feel fine with little pain so i try to exercise as much as i can, so we go hiking for about three miles. i have to stop a lot and take breaks but i can eventually finish. 

  I need to know of other treatments that might help besides medication. ive taken yoga, gone to the chiropractor, had shots, and taken hot baths in epsom salt. I am worried that i have gotten to the point where nothing else will work. I plan on speaking with a neurologist when i get insurance again and possibly a back surgeon. 



  • memerainboltmemerainbolt IndianaPosts: 6,346


    welcome to spine-health

    i am so sorry you are going trough all of this at your age. any age is bad enough but i hate to hear it for the young.
    i would see a neurologist or spine specialist (one that deals in scoliosis) as soon as you can. to me, you need to know what you are treating before you can get treatments.
    there is a real good discussion on the forum by wllady called "my scoliosis". it is her journey with scoliosis before and after surgery. i think you might enjoy reading.
    i also have scoliosis, mine is called idiopathic, hit me like a freight train 3 years ago when i was 65.. that combined with serveral other spinal issues has not been easy.
    please keep us posted on how you are doing.

    please click on the welcome link below for more information to help you get started on the forum.

    welcome to spine health

    Veritas-Health Forum Moderator
    Please read my  Medical History
  • itsautonomicitsautonomic LouisianaPosts: 2,561

    Neurological issues can complicated the heck out of anything, it looks like the neurapathy correlated with the worsening of you mobility and issues from post? What I did not see was a reason for the neurapthy, is it based off the scoliosis, is it based off something else or just idiopathic ?

    The problem with idiopathic neurapathy is it only means there is no origin/driving factor that can be found, its an accepted practice in medical school to just live with teaching some things cannot be found as to why.  Now this is what they are taught, but history shows that idiopathic only really means no answers at the time, upon discovery and invention idiopathic things often disappear because there is a diagnose able reason to see why. Always a reason, not always an ability to see that reason. The good Drs, know this and tell you this, but they are researching ways to find the root cause one day.

    For neuropathy diet, blood tests, blood sugar, lifestyle, large and small fiber elimination, toxicity, compression, and so many more things need investigating before saying its idiopathic. 

    Circulation , for me , is one of the largest red flags in neurapathy because lack of blood flow can equal nerve death.  That is why often so many people claim to feel better with improved circulation and exercise is so important .  I do not know what a dense artery is , but is this a sign you might have artery/vein issues in body?

    As far as muscle relaxers , baclofen has been the largest help for nerve pain and that is normal as its the go to for spinal cord spacisty and nerve pain in many cases.  I had no relief with any other muscle relaxer and I tried alot of them.

    I am not a doctor , and I suggest posting in scoliosis forum to compare symptoms, but face drooping/stroke symptoms seem odd for scoliosis without significant nerve compression. Deconditioning can be a big issue with any severe health related problem so that could be some of the mobility parts, but doctor should address that.  But neuropathy symptoms from unknown source, face drooping/stroke symptoms, loss of reflexes, loss of feeling on one side of body............. have any of the doctors suggested a brain scan to rule out neurological issues ?  So often one health issue is just a red herring covering up something else or making multiple health issues more complicated.  

    Hopefully others with scoliosis will chime in

    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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