Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

179 Members
421 Posts
0 Online
Brain & Nervous System
/ Syringomyelia Support Group

This site.

deleted_user
deleted_user
I thought I would meet more people on this site with the same problem as me, but I must say it has been slack, You meet more people in the depression site but 1/2 of them do not know what you are talking about when you say Syrinx. lets get this site going...... Baz
deleted_user
deleted_user
weak !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.
Monte
Monte
Yes it is sort of weak...But if you have more to add feel free to ask questions or to contact some in the group.Maybe your the one that can get things going and spark some life into this group.I hope that you are because we need to get off our rears and talk about it.I know it is hard to talk about it when you are in pain or you can`t feel your fingers and toes but maybe they have those things that you can speak and the computer does the typing,all we would have to do is talk.I don`t have one of them yet but I can see that some day I might have to get one so that I can stay in contact.
deleted_user
deleted_user
I agree Monte,
If someone asked an actual question..... then you never know someone may reply!
deleted_user
deleted_user
Just what I mean, if there are so many people here ask or tell your story so you can get advise or just hope. Talk up there are lots of us out here.
deleted_user
deleted_user
Well what can I say . www.asap.org is the main Syringomyelia website . and when you google Syringomyelia that comes up first. I check in here every so often . Baz do you like this site because its small. Roz
deleted_user
deleted_user
i'm new to this site. does anyone know of any web sites besides asap for syringomyelia related topics?
Posts You May Be Interested In
  • carrie415

    Widow/Widowers Traveling/Cruise Trips??

    Posted by: carrie415
    Last Reply: Myfavorite
    11
    I miss traveling with my husband. Has anyone found a specific site regarding cruising for widow/widowers or any sightseeing trips. Not interested in being with couples and kids,,,I realize a cruise ship will have a portion size of families and couples, but perhaps they also put together a part of the cruise ship for groups of widows/widowers????
  • joannklingaman

    Grief

    Posted by: joannklingaman
    Last Reply: lovesloons
    11
    A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...