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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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New Member
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Hello, I am new to this forum and currently having trouble with doctors taking me seriously over a condition they diagnosed being syringomyelia. I have had several mri scans with contrast all confirming the diagnosis-I am told it is inoperable and discharged -but I was advised to loose weight as this may help my mobility -I am quite amazed that doctors can do this -add to your burden of life and basically tell you to get lost and get on with your condition and only bother your gp if it gets worse-what are they gonna do tell me to get lost again if I do suffer a worsening of my condition ,clearly i objected to their decision by making formal complaints only to get negative replies and reassured that if my problem does get worse my gp can get me back to the neurological hospital in queens square london quickly -with no definition of QUICKLY -which could be up to a minimal 3 months wait and what do I do now I am a carer and mother to 8 children 5 of whom are young and rely on me to care for them!
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Senior Member
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Hi Margaret ~ I'm so sorry you've gotten this diagnosis. Bless your heart, you certainly didn't need this.
![]() Well, as you know, syringomyelia is a progressive disease with no known cure. Since it's chronic, you'll have to rely on your regular doctor to take care of your symptoms and pain. Hopefully your doc knows enough about this to properly take care of you. If not, you may have to look for a doctor who DOES have experience in treating patients with this disease. I wish you the very best ~ I can only imagine how frustrating this must be. Please know that you're in my thoughts and prayers. ![]()
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability. Often the test of courage is not to die, but to live.. .................................................. ...............Orestes |
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