Hey friends, I didn't see this board when I first joined the site a few days ago.

I'm Raigne, and I was diagnosed with ACM1 when I was 38 years old. I'm about to turn 48 in May. I spent the majority of my life with all the typical ACM symptoms, pain in the back of the head/neck, shoulder pain, not feeling hot or cold in hands or feet. No balance, always falling down and just pain, pain, pain.

Tons of MRI's (once they were used regularly), numerous Neurologists (none of whom were trained to spot either ACM OR Syringomyelia - which I also have) and a six week migraine where I went into the hospital for a week. Finally a new Neurosurgeon came to my neck of the woods (back then it was Dallas/Ft. Worth, Texas) and before my first office visit (after he got my records from my reg. doc) he sent me for an MRI. I walked into his office with my husband and 1 year old son and he told me he knew exactly what was wrong and how to fix part of it.

So in October of 2004 I had the decompression surgery. I literally woke up from the surgery...BRAIN surgery...feeling better. That pressure where you feel like the back of your head is about to explode was gone. Of course I was bald and rocking a nifty new zipper scar, but the ACM pain was gone.

Unfortunately, my Syrinx got worse over the years. I was told I couldn't pick up my little boy again as lifting anything over 10 lbs was a no no. We had work arounds for everything.

I'm not sure if any of you have the following experience, but I thought I'd put it out there to let you know you aren't alone.

Since the surgery (and it's not because of the surgery, it's just because my body was so injured for so long - 38 years), I've been diagnosed with the ACM, Syrinx, Fibromyalgia (it sucks, btw), Osteoporosis, Reactive Hypoglycemia and Allergic Fungal Sinusitis.

Next week I begin testing for Multiple Sclerosis as I have a majority of those symptoms as well. Syrinx can mimic MS to an extent, but the stuff I'm dealing with can't be laid at Syringomyelia's doorstep. I've already been told by a few dr's that they believe I have MS, I just need to go get the official diagnosis, or a diagnosis for whatever is going on now.

I continue to rest my neck often and continue to get checked out by MRI's periodically to make sure all is ok and no surgical intervention is again needed. I'm with a great pain management clinic and I just play the cards I've been dealt to the best of my ability. I'm losing the ability to walk again (I have a couple episodes a year where my legs "go") so I've been staying home a bunch and just resting. When you're constantly tired from dealing with pain, being able to stay home is a good thing. I'm blessed that Syringomyelia is on the Social Security Administrations list of acceptable claims for SSDisability, though it's hard to get approved on a disease that few have heard of. It took me trying once on my own and then hiring an attorney for the appeal to finally get it.

So, I'm going to read thru posts and see how everyone is doing and see where I can help, encourage or just make ya laugh.