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Thread: Multiple Diagnosis'

  1. #11

    to Laners

    syrinx is located T3 - T12 with max at T5 (largest is 3mm)...thanks for info!!

  2. #12
    John Hopkins is the best for this type of work. I just had a second surgery to repair my T7-8 disc at Cleveland Clinic. THey did nice work. The last surgery was a microsurgery which only removed a piece of the disc, but did not fix the spinal cord compression. Cleveland Clinic removed the screws and rods put in from the last T7-8 surgery. I am in recovery at the moment. Post op 3 weeks. I also had surgery on my neck for C3-6 disc removal and fusion. There are other less minor issues in my thoracic and lumbar.

    My symptoms were multiple issues including memory issues, brain fogging, headaches, legs that get tired and heavy, constipation, eye issues. These all started about 2 years ago. I was running short races 3 years ago when things started getting bad.

    My neurologist is still going to do more testing in the next month. They think there is still something else wrong. So far, they have tested for MS, lupus, lyme, celiac, b12 deficient, cadasil (using genetic testing), and probably others.

    You need to keep working with your neurologist and neurosurgeons. Some complicated conditions take a while. Be patient, but persitent. If dont like the answers, ask more questions, or move to another Dr. I have had over 100 dr consults and visits over the last 2 years. It has been a busy time.

    Good luck.

  3. #13
    I have 3+ neuro disorders, and it's so frustrating...and as they're all linked in some way (TM, MS, RSD, encephalitis) it's often impossible to tell which symptoms belong to which disorder, so i just stopped caring. if it matters my neuro can distinguish which symptoms require which treatments. but most of my treatments have crossover effect too.

    i went to jh early in my "neuro career" - before i had any definitive lab results (which i do now), and they refused to treat me, insinuated that i was nuts, and wanted me to return to see 2 of their related docs which happened to be running the only 2 clinical trials at the time. but it depends which doc you get. my neuro is brilliant, but he's not accepting new patients.

    i'm now coming to terms with the fact that i will be in some degree of pain at all times. and with the rsd, i can no longer take pain pills and must rely on treatments that aren't covered by insurance. there are battles in every corner of fighting neuro/sci. i wish you the best possible results.

  4. #14

    ty Melanie & attention Dr's

    Thank you Melanie for your reply. I just returned from John Hopkins and the doc said that I had an attack of TM back in 2008 but no longer am dealing with that. The TM caused damage to the sensors that carry info to my brain. I do, indeed, have a syrinx, which I will always have and will cause all kinds of pain and swelling in my ankles due to pressure on my spine. I also have an autoimmune disease that is unknown at this time. They drew 10 vials of blood for extensive workup. Seems to think it is antiphospholid syndrome but can't be sure. He also said that my vision was due to meds (can't look to the right ...eyes feel crossed). I go to eye doctor when I return and I have 6th nerve palsy. I'm wondering if all of this is related somehow. Anyways...thanks for the reply and I'm still a work in progress. God Bless!

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