I was diagnosed w/SM in 12/09. C2-C4 and T2 to L1. I was also diagnosed w/ Nuero and Lymphatic Sarcoidosis, Sjogren's and Raynaud's. Finally, Validated @ last, not crazy! I was referred to a great Pain Mngmt Dr., whom I kept telling my spinal cord hurt, someone finally listened. Had an MRI w/Gad., that is when I was also diagnosed w/SM. I Went to NIH to Dr. Heiss (Neuro Surgeon, meet him @ NIH.com), great doctor!!! was told surgery would not help me and healing was issue due to my AI diseases. I am also going to John Hopkins for further testing. I am just getting tests still. NO TREATMENT as of yet. Everyone is afraid to try anything as I have horrible reactions to most drugs that help. I am now considering the Medtronix Pain Pump. I push hard on good days, I pay for it the next day. I am blessed w/a wonderful husband, best friend, family and friends! My best friend has been my rock! She, besides my husband were the only ones that "got it" for a very long time! Although, I miss my old life, I feel blessed! I try to accomplish 1 thing everyday! I also sell on E-bay. That is difficult @ times due to my finger pain and co-ordination. I have alot of hope, 2 very supportive doctors. I now Breed my horses instead of ride them & would like to spread awareness in the horse community. I hope to meet people who I can learn from, network w/, cry with, and also listen and give hope & pray with. This disease does not define us. Never let go of that! We are still the same person! I feel the most IMPORTANT thing is to EDUCATE Family members & friends. For many years I heard get up, push yourself! They need to realize that sometimes you just cannot! You may not even look sick! LOL. I live in the U.S., in MD, w/in 1 hour of John Hopkins and 25 min. from NIH. I would love to help anyone that I can, anyway that I can. I WANT TO "PAY IT FORWARD"!
Amber said:April 1, 2010 5:46 am PST
I'm seventeen years old and finally after two long years of living with chronic pain, the doctors found out what was wrong. I went through a handful of doctors, if not more, and six MRIs for them to figure out. I was diagnosed with SM and Chiari Malformation I. It has taken over my life so much that I no longer attend school, which isn't normal for me. I am a straight A student, and not to toot my own horn, but a genius. The doctor told me I would have to go through surgery before I become severely disabled and that there would be a 50/50 chance that my symptoms would go away. I've never been so frightened in my life, but it was a relief when I found someone who knew what was wrong with me and a possibility of how to fix it. My prayers go out to the rest of you living with SM, and I just want you to know everything will be okay. We are stronger than we think, and what doesn't kill us only makes us that much stronger.
Veronica S said:March 20, 2010 10:28 pm PST
I was diagnosed with syringomyelia in 2009, but I have had the symptoms since 1999. I have flare ups every 2 to 3 months. The pain is getting worse and is is coming more often. I just want to find some relief I just don't know what else to do.
Debbie MacDonald said:March 12, 2010 8:15 am PST
I have been living with ACM since being diagnosed in 1993. Have had 2 decompression operations
Lori said:February 1, 2010 10:16 am PST
I was diagnosed with SM in Sept 2009 after suffering symptoms on and off for several years..even though I kept telling the Dr's there was nothing wrong my Neurologist at that time kept telling me it was stress related and that all my tests were negative. When I asked for a spinal MRI she refused saying there was not use as everything else was normal. Thank the goddess I remained persistent and found a new Neurologist who actually listened to me and took everything I said serious however he did say that for me surgery is not an option given my syrinx is taking up my T4-T9 fortunately I have a great family in the way of support however not being able to work because of this is very difficult for me as I was always used to providing for my family it is great to find websites that help educate when there is no little out there by our medical community
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