Did I really just join an online support group?

Seriously, I feel like I'm going to rehab.

But really. I have no idea why I joined here. (all honesty.) I haven't been diagnosed yet, but boy, I'm convinced. I'm not one of those paranoid people who thinks they have every disease on the planet, but... I'm 93.5% sure I have ACM. I have so many of the symptoms, and my mom was diagnosed almost 30 years ago. I have problems with coordination, Balance issues, neck and upper back pain for at least 4 years... And oh by the way, I'm 14.

Over the past few two days, I've done testing with a chiropractor in my area that specializes in neurology. Dr. Gates is amazing. But the right side of my body isn't as responsive as my left, which he said was attributed to my cerebellum. My mother has this SAME PROBLEM on the SAME SIDE of her body. Her and I are sharing a lot of symptoms, and she's already been diagnosed.

While I am extremely intrigued by the human body, after the excitement wore off, man. I am freaking out. I am freaking out so much that I joined an online support group for an undiagnosed disease. Surgery? eeeehhhh. I've always joked with my mom saying that "her brain used to leak into her spine" and now that's what I've got myself thinking. It's stressing me out, bad. I'm not getting an MRI for a little while, and I'm just about going to die.

I hope some of you can relate to what I'm feeling... Normally I'm a little more concerned with my grammar, but frankly at the moment I don't care.

Hi Lauren, you are very bright for doing your own research & for reaching out. You will find a nice support group here. Good luck with your search.


Please stay as positive as possible. This malformation has many different stages and symptoms. You may not need surgery. It is not something I would want anyone else to have, if they didn't have to. You might also want to know it is very dangerous for a Chiari patient to see a Chiropractor. Please let us know how your MRI turns out. Hopefully there will be another solution to your symptoms. If not, we will be here for you. I am not trying to play down your symptoms. This illness and surgery is horrible. I just pray if you have an illness, it is something that can be healed totally and you will not suffer for the rest of your life.


Abby can you share the link to that check list?

Welcome to the group Lauren...I'm sorry you're in the position to need to find resources, etc. I haven't been diagnosed yet either, but I have found that I can find WAY more information and help from Chiari patients than the actual doctors I've seen.

Abby said:

Bless you, Glad your here with us. Sounds familiar what your saying. The only true way to know for sure is to have the brain MRI. In the meantime, try not to be so stressed. Know it is easier said than done, but stress makes your pain and symptoms worse. There is a check list on the here, so look at it and check the things that pertain to you.
Know you are welcome here and we are glad you joined. We are all learning from each other and talk about the latest treatments, and procedures.
Keep us informed.