8
Which advice would you give to someone who has just been diagnosed with Syringomyelia?
Advice for the newly diagnosed with Syringomyelia, written by people who have lived it. What they wish they had known on day one.
stay positive and see only experts
Posted May 30, 2017 by Linda 900
Trust your gut if you feel that your docs are not on the same page. Advocate for yourself and ask questions. Support groups are around on FB. I am kinda shy about talking about my worst pain, just know there are people who can help.
Posted Dec 1, 2017 by Rebecca 270
Research, research, and more research. Keep an ongoing journal of symptoms. Always be your own best advocate. And most importantly do not let doctors convince you that what you feel is not real. Nor do not let the horrible opinions of outsiders get to you. Until you live with this, you simply cannot begin to understand.
Posted Mar 22, 2018 by Tammie 4000
After I had my tumor removed, I had no idea I had a condition called Syringomyelia until after having physical problems as a result of physical activities I should not have been doing. My neurosurgeon was wonderful, I just wish he added to his advice "Live your life" with.....but your condition will have some limitations. I know he didn't want me to be scared of living but I would have been more informed about Syringomyelia and childbirth, avoiding certain gym machines, exercise activities to name a few. The symptoms of Syringomyelia is different for everyone. Find a support system of people going through syringomyelia. Find Syringomyelia specialists near you and stay informed .
Posted May 21, 2018 by Sue 1400
Take your health in your own hands . You need to educate yourself as much as you can because sadly there's not a lot of awareness on SM. So a lot of the times you and your doctor are learning together. Don't let the fear take over you. Join support groups. Always look at the positive even if it small and never give up on yourself
Posted Jun 20, 2018 by Austyn 3500
First of all be relieved that you found out what is wrong with you. Second one realize that this is just another tricky day you're not going to die in fact it doesn't have to change your life in any way shape or form. Be happy in the fact that you didn't find out that you had an operable lung cancer! Another words cheer up John the worst is yet to come. LOL keep a stiff upper lip!
Posted Jun 24, 2019 by Jack 2200
Translated from spanish
Improve translation
First of all know q is not the end of the world is not a disease of you go to die the truth it is very hard to wear, but thinks that there are worse things in life, I would have liked to compare my results with people q are not sick and to understand from the outset that I have something special for which I can not give the same result,
Posted May 16, 2017 by María Angélica González gallon 1800
