Our unique social network is home for those suffering with Syringomyelia (SM) and other related medical conditions like ACM. Free of charge!

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Purchase your Syringomyelia Awareness Wristband today!

Buy yours today, help increase Syringomyelia awareness by purchasing and wearing our Syringomyelia wristbands. Profit from our products are used to help fund our Syringomyelia projects.

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Latest Activity

Amber Formoe (SM) commented on Andrea Russell (SM)'s blog post Losing my legs and time with my family
"Hi Andrea, I would like to encourage you to get as many opinions as possible. I know the pain you…"
44 minutes ago
Ashley (sm) commented on Ashley (sm)'s blog post horrible experience with NS
"thank you everyone! i made an appointment with my neurologist to try and get a second opinion on…"
4 hours ago
Ashley (sm) updated their profile photo
4 hours ago
Carion Fenn, sm-(SM ADMIN)'s blog post was featured

Help us help others; purchase your Syringomyelia wristband today!

Syringomyelia Awareness Wristbands Help raise awareness by purchasing and wearing your…See More
6 hours ago

Blog Posts

Help us help others; purchase your Syringomyelia wristband today!

Syringomyelia Awareness Wristbands



Help raise awareness by purchasing and wearing your Syringomyelia wristband. A great conversation piece in telling others about SM, helping to build a strong foundation of support from the ground up and bringing awareness to this rare disabling neurological condition. This custom design RED with white accented writing and Canadian Maple Leaf silicone debossed wristband (202mm x 12mm x 2mm) by all of us living with…

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Posted by Carion Fenn, sm-(SM ADMIN) on May 31, 2012 at 12:40pm

Losing my legs and time with my family

In 2001, a shunt was placed in my syrinx.  I made almost a complete "recovery".  

My bladder began function, with therapy I was able to walk again and it took a while, but I was even able to dance. 2 years ago it started again - the falling,  bladder sensation of urgency  and I was using a cane. I went to the neurosurgen to check on my shunt.  It was fine and I asked for a script for physical therapy and that seemed to work until lately.  The symptoms returned at a very fast pace and…

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Posted by Andrea Russell (SM) on May 30, 2012 at 5:01am — 2 Comments

Social network banner, your opinion

We would like to ask everyone for your feedback and opinions. The name of our social network is Carion Fenn Syringomyelia Social Network.

Who we are: Our unique social network is home for those suffering with Syringomyelia (SM) and other related medical conditions like ACM. Free of charge!

Question is? What should be on our banner to make Chiarian feel welcome? Should we stay as A Syringomyelia social network, or should we change the name. Not sure but your feedback is…

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Posted by Carion Fenn, sm-(SM ADMIN) on May 29, 2012 at 3:52pm — 5 Comments

New Syringomyelia Wristband Idea

Hey everyone,

 

we are looking into creating another wristband for our support projects, we would like to get your feedback, and any suggestion you might have. The current red one was designed by our members when we first started.

 

So we are looking for:

 

Style: Plan

Shade of Blue: royal Blue

writing on the front: Syringomyelia

writing on the back: Together we are stronger or…

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Posted by Carion Fenn, sm-(SM ADMIN) on May 26, 2012 at 8:30am — 12 Comments

I'm having a very good day today! :)

I have to say this... Writing here about my feelings does wonders. Thank you Miss Carion for making this possible :)

Posted by Mari Nykänen (sm) on May 26, 2012 at 4:11am

tryin to enjoy myself despite how i feel!

Iam trying to get up and get ready to go to ky for weekend with my hubby, supposed to decorate graves and go to family cookout, with my husbands family but I have had a mild headache for two days and I've been feeling achy and sore allover! I missed it last year, but iam dredding the drive and then when get there not really any good place to sleep. I don't want to be a drag but I really feel bad and try to keep up and not let my husband down! I can't even get up and get stuff done around house… Continue

Posted by cynthia morris sm on May 25, 2012 at 12:58pm — 5 Comments

It's not fair!

More problems in here. How long it will take to find the balance? 

When I had Lyrica I had a very rare side effect. I ate pure sugar, alot. Then Doc started Triptyl. It caused elevated pressures, dry mouth and made me feel drowsy 24/7. Panacod (codein) was too addictive and made my stomach very irritated. Tramal and Oxycontin were useless. Gababentin made me lose my memory completely. Lamotrigin has been the worst. 2 weeks ago I woke up covered with nasty rash and my skin had…

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Posted by Mari Nykänen (sm) on May 25, 2012 at 11:01am

Blood in ear canal...

Hi pain pals !, My headaches have been awful lately... yesterday I had blood in my ear canal . Has anyone else had this symptom?  thanks xo

Posted by judy friesen SM/ACM on May 25, 2012 at 10:26am — 2 Comments

Dealing with SM

Wow what a ride! I think I deal with sm and then I have a few Xtra Large pain days and it feels like I right back to square 1. I don't think anybody but us would be able to understand how we can feel so bad while we look so goog lol.



We'll I just wanted to say I get you guys, at least we have someone to understand, I am very positive usually and even today but have to scrape myself of the floor somedays. I know you go through it too and that hElps.



I hope you guys will… Continue

Posted by Marissa Theunissen SM on May 23, 2012 at 3:46am — 4 Comments

Ohio State Appointment!!!

 

Had my appt yesterday and still no answers but at least she did some test (which noone else has done) shes gonna send me to some kind of therepy place (medical massage, acupuncture) They will prally give me a 10's unit, or something. She did ALOT of blood work. shes…
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Posted by Sarah Wesco (SM) on May 18, 2012 at 3:26pm — 7 Comments

Notes

Happy Anniversary to us & Thank you for your support!

We am so please to announce that we will be celebrating our 4 year anniversary on March 18, 2012! This is a very exciting time for our group as we now have over 660 members around the world and we reach more and more people who are diagnosed with Syringomyelia everyday!

 

To date, our website has gain much recognition on the search engines proving that SM may not be as rare as they originally thought. With the use of new technology, better education of doctors and of course…

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Created by Carion Fenn, sm-(SM ADMIN) Mar 17, 2012 at 11:52pm. Last updated by Carion Fenn, sm-(SM ADMIN) Mar 17.

 
 
 

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