Diagnosis & Staying Motivated | Life with Syringomyelia

[@TMM-SKS]

great inspiration. My daughter (she is just 23 years of age) has been diagnosed with syringyomyelia. She has right leg stiffness. She is a student in Berlin and enjoying her studies as well as traner of yoga and sound healing. She is fighting with it and im sure she will get the victory

[@vanessalawless]

Thank you for sharing your story. I was just recently diagnosed with syringomyelia and have been feeling so alone in it. Listening to you I have hope that life can continue on and will find the best ways for me to manage moving forward. Thank you 🙏

[@Me-db9bl]

WE are syringomyelia Warriors and WE will survive and Rock ist...

[@daniel4God4ever]

I’ve had this curse since I was 6 months old…I’ll be 61 yrs old this year. I was diagnosed with it at 40 and my chronic pain is unbearable everyday..day in day out for decades and decades. I need and want to retire but cannot financially. It is sheer hell. Thanks for sharing your story with me.

[@thouvy]

I, too, have idiopathic syringomyelia (2 syrinx). I have urinary tract issues, but my urologist prescribed intermittent catheters. It really changed my life for the better. If you haven’t already, you should look into it.

[@adelamaresova3779]

Thank you for sharing your journey with syringomyelia. I was diagnosed recently and I start my journey. ❤️ Sending hugs and peace from the Czech Republic.

[@urbanyolk]

Thank you for your comment. Feel free to ask any questions.

[@adelamaresova3779]

Urban Yolk Thanks for the answer 👋😋, one question occurred to me. Do any medications, rehabilitation or other natural products, etc. help you with your symptoms?

[@urbanyolk]

@@adelamaresova3779 There are some things I do to manage the pain. I personally stick to a routine, follow a sort of diet and exercise regime. Though sometimes medication is required. I will make a full video on it but for good information you can look at Worldwide Syringomyelia and Chairi Task Force. They have a support group on Facebook as well. The people there are filled with knowledge and you may even find someone with very similar symptoms.

[@adelamaresova3779]

​@@urbanyolk I'm looking forward to the next video, mainly about your exercise, diet and routine :) and thank you very much for directing to the group on FB. Peace

[@Ashli-es8hi]

Thank u so much for sharing. I have this too. Only one tho in my cervical spine. God Bless You ! Ur in my prayers. 🙏🙏

[@music1Dlover]

Thank you so much for sharing your story. I've been diagnosed with syringomyelia last year and i'm at a stage where i go from doctor to doctor and i've many down times... today was not a good day for me. So i googled and i found your video and it gave me a feeling of not being alone with it. I hope you never stop fighting and keeping a positive mindset. ❤️

[@urbanyolk]

It is always great to hear that I have helped. Some days will be bad and even make you feel like you will never find stability. Don't give up, you got this. You will find a way that works for you.

[@andrevos8590]

Your story is relatable to a wide scope of difficulties everybody faces. There are problems that are insurmountable. You chose life; be that in spite of or because of. That is the message I hear. It is the lesson many people need to hear.

[@missamelie17]

I hear you & understand. I was becoming paralyzed & then diagnosed with syringomyelia in 2006. I am shunted in my thoracic. Sending healing & understanding thoughts your way. xoxo

[@Katie-jy5ex]

I just found your page and it seems like we have gone thru the same thing! I was undiagnosed for almost 2 years then they found my cyst c4-c7. They still say its to small to cause my pain but there is nothing else to cause it! I will continue to follow you and follow your story! Watching other people live with chronic pain gives me hope. I struggle daily. Stay strong! ❤️

[@Randomhumaan]

How would THEY know if it’s not the reason causing your pain? I’m fed up with doctors. Mine is from c5-c6. My shoulders burn all the time, my neck and shoulder muscles stiffen up every day, my shoulders are gradually becoming weaker and weaker. I’m getting an emg test soon….hopefully my doctors can’t gaslight me anymore after that

[@mutchdorse7072]

I have the same issue. C4-C7 and doctors say it’s minimal. No treatment options have been given to me. I am seeing a new neurosurgeon this week with hopes of something new. You’re not alone, I know it’s hard. And I know it’s hard being told that there’s no way you can have symptoms when you’re having pain in the middle of your back that radiates to all limbs. I’m sorry that you have to experience this. Because I have been told it’s all anxiety for years it’s sometimes hard to tell if it’s the cyst or if it’s anxiety.

[@Bellini566]

I know it isn't easy to share your experience. So thank you. It is good for other people to hear this, to know that there are people that might understand what they are going through. It is also good for you. Please keep sharing.

[@joeberdi]

Thanks so much! I have one lumbar very hard to deal with it. Learning process

[@remixfm1170]

I also have had syringomyelia for 4 years. Our choice is hope and not despair

[@Bellini566]

I think it would be good to know how you manage your daily pain?

[@urbanyolk]

I'll get something together to share more about daily pain and management.

[@pamhankes900]

I gave it another chance but waiting next for the darn cigarette was too much!

[@michelleedwards5876]

♥️♥️♥️

[@CharlVincentNigrini]

♥️

[@pamhankes900]

Sorry, I really wanted to stick around but I kept wondering how long you were going to keep sitting that tea!!!