Recently diagnosed and looking for support

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Recently diagnosed and looking for support

Postby IrishSunshine » Sun Apr 24, 2011 9:28 pm

Hi, I am Misti and I was diagnosed with SM on St. Patrick’s Day this year. I’m Irish so it was not the best possible day to be diagnosed, luck of the Irish, right? My syrinx is located between my C5 and my T5 and it is causing a lot of frustration to say the least! As I have been going through this journey I have been keeping a blog with my progress, struggles and updates regarding my diagnosis. I am newly diagnosed so I am not the most versed in this disorder but any help, comments or suggestions are very welcome. You can find my blog at: http://irishsunshinemisti.blogspot.com/. My hope is that I can help those who have been newly diagnosed with SM and also to gain some insight into this diagnosis. Thanks in advance for any advice you can give!

Misti
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Re: Recently diagnosed and looking for support

Postby karenb » Mon Apr 25, 2011 6:10 pm

Hi Misti,

Well... you've come to the right spot for info...

I was diagnosed with SM about 4 years ago - after spending 10 years walking with a cane, dislocating bones in my feet, and generally having an unpleasant time of it. My doctor told me a had a syrinx, told me how to spell it, and handed me a script for my walker. It took a nurse and me over an hour to figure out what the condition actually was (since the doctor's handwriting was as readable as most).

My syrinx is from T6-T9, 3 mm at its widest. Every doctor has different ideas about how much pain it can cause and how to treat it. Three Neurosurgeons have concluded that it is not operable. My version tends to have a lot of myoclonus (my legs jerk about a lot), and I sometimes experience periods of rapid leg movement that mimic a seizure. Due to the myoclonus, I have a tendency to fall - that was why they put me in a walker. About a year later, I had to start using a wheelchair part of the time (to prevent falling when I was fatigued), and now I use one whenever I leave the house (I can still use my cane, my walker, and the furniture to keep myself safe in the house).

I still live alone, but had to stop working about 2-1/2 years ago, since the side effects from the pain meds & the meds for the myoclonus were too much to handle while working a high-stress corporate job.

There's a thread going about syringomyelia on the "All About Chiari, Syringomyelia, and Related Disorders" group that's got some info (see http://www.asap.org/forum/viewtopic.php?f=3&t=13131). There's also a really good posting called "TIPS FOR LIVING WITH SM/CM" (http://www.asap.org/forum/viewtopic.php?f=3&t=8060)on the same group.

ASAP (http://www.asap.org) has a great booklet of information about SM - you can request a packet in the mail, or download and print your own - it's got a lot of good information.

Good luck, and welcome to our (not always so) merry band!

Karen
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Re: Recently diagnosed and looking for support

Postby hikealaska » Mon Apr 25, 2011 9:22 pm

St. Patricks Day must be a lucky day indeed. That was the day of my decompression surgery 3 years ago.

I was diagnosed with CM shortly before my decompression. It took awhile for the correct diagnosis. I was diagnosed with just about everything else in the two years prior to the CM diagnosis. Which by the way was an "incidental note" on the very 1st MRI I had, which is supposed to mean insignificant.

I had the decompression, then was told that I had SM, or "widened central canal" almost the whole length of my spine. The wider SM is right between my shoulder blades.

This web site has been a huge help to me on this journey. You are in the right place to get support and help yourself navigate through all this. Best of luck.
Karen
"People don't get what they deserve. They just get what they get, and there's nothing any of us can do about it." - House
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Re: Recently diagnosed and looking for support

Postby chrisw » Tue Apr 26, 2011 8:34 pm

Sorry your here but we welcome you with open arms!

Having a rare disease is tough, and we are all here to help. Sometimes it is advice, and sometimes it is just to listen and lend a shoulder. Good luck on this journey!

Chris
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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