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Myelomalacia feels full blown

It is the worst nerve pain you have ever felt multiplied by 10.. Oxycotin 40 mg 2 times a day hardly touches it.. Is there anyone out there that. Can help me . I need a support group, the doctors don't help except for medication.


  • LizLiz Posts: 7,832
    We are a support group but sometimes there is not any more people can do but offer support

    The Blend

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • All we can offer is support, and the suggestion again, that you seek out other doctors to help you. It seems like the ones that you are seeing aren't being all that helpful with other options or treatment suggestions or making recommendations for other resources.
    Oxycontin is not going to help nerve pain, it is not meant to........and 80 mg per day is a hefty dose, so you really need to consider finding another doctor to see if they can offer you more in the way of options to manage the symptoms and nerve pain....
  • NonnaNNonna Posts: 3
    edited 01/30/2015 - 8:58 AM
    I have myelomalacia and I take 1Aleve 2x daily and 2 extra strength (1,000mg Tylenol. I use to take 3-4 Advil ( 600-800 mg ) and the extra strength Tylenol. The weather seems to affect how I feel. A great weather App is Intellicast. When I feel bad Ilook on their great Weather site and understand with the weather fronts. Sometimes Ifeel good and sometimes I am in bed with pain and/or weakness.
  • loosing strength, endurance, muscle tightness and heaviness.
    Does anyone know of anyone that has been through this?
  • SavageSavage United StatesPosts: 5,427
    Have you talked with doctor about increase in symptoms? What does he say for you to try to reduce pain?
    You said doctors don't help except with medications.
    But sometimes the right med or combo of meds is very effective!
    Esp to get you through the horrible times until your body settles back to its baseline pain.

    I take OxyContin 2 x / daily to take the edge off pain.
    Also, I take neurontin 300mg, initially, 3x/day. But now I only need 300mg 2x/day.

    Different meds work better for each individual response.
    Trial and error led me to neurotin and it made huge relief in my life.

    Try and continue to allow doctor to tweak or change meds to get your body to settle down.

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • is getting worse, nerve pain getting worse. Doing therapy no help.
    Doctors not helping. Any secrets out there?
  • itsautonomicitsautonomic LouisianaPosts: 1,804
    Yes, I you have not already get to a large teaching hospital.
    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.
  • Ugh! I'm sorry Mike. It sucks, it really does. I think I've already told you everything that I can think of. Until you can get the right medical care don't forget that all the little stuff, particularly distraction can help, even just a little. I didn't find relief until I found the right specialists. I've seen so, so, very many! I know it's exhausting but you need to keep pushing & searching. I'm sorry.
    Osteoarthritis & DDD.
  • MikethepikeMMikethepike Posts: 243
    edited 07/22/2015 - 1:57 AM
    ive been going to a large university hospital.
  • itsautonomicitsautonomic LouisianaPosts: 1,804
    Are there any specialists in that issue mike ?
    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.
  • Can someone please help me understand myelomalacia?
  • Can someone please help me to understand myelomalacia??
  • Yes I am experiencing the same symptoms.
  • What has happened to the myelomalacia support group?
  • dilaurodilauro ConnecticutPosts: 9,836
    I am not aware of any myelomalacia support group here.
    Most of the discussions started several years ago and documented in conditions not covered.

    For details on
    myelomalacia, use the search box and click on articles.   There a some that provide detailed information
    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
  • Hey Mike -- Mark here. I was diagnosed January 2015 and have been progressively getting worse. Seeing a new Neurologist on Tuesday. Currently on a Fentanyl patch, Neurontin, hydromorphone, Primidone and Baclofen. Keep trying to get a combination that works. Symptoms include neck pain that radiates into my head, arms, back, legs. Constantly twitching and jerking. Difficulty swallowing. Had a TIA and mild stroke. Kinda scary. Hopefully this new Neurologist will have some new insight.
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