Last summer, June or July, I started having these “symptoms.” It started with my wrists aching. I’m talking a deep ache. After a while it moved up to my elbows. Then my toes. Then my ankles and feet. Then my lower back. And then my gait. My left foot/ankle started to turn inward.
During a routine visit with my GP, he noticed how I was walking and sent me for an MRI. He suspected MS. Thankfully, it wasn’t MS but he was out of ideas so he sent me to a neurologist. A shitty one. One that was rude and condescending and clearly didn’t GAF. He ran some tests on me including an EMG and nerve condition test. He said everything was “normal” and halfassed diagnosed me with fibromyalgia. My doctor didn’t agree with the fibromyalgia theory but didn’t have any other answers for me, either. He told me, and I quote, “You have a myriad of symptoms.” I kind of got into it with him in the examining room. I mean, I already know I have a myriad of symptoms. I need to know what’s causing them! That’s when I DEMANDED that he refer me to my uncle’s neurosurgeon. One with a brain. One who actually cares.
This NS redid all my tests, including the nerve conduction & EMG tests, did another brain MRI, one with contrast and one of my neck and bingo! There it was!
A syrinx in my spinal cord from C5-C7.
A syrinx is like a cyst that fills with cerebral spinal fluid that messes with your spinal cord–and your spinal cord messes with just about everything else.
When you have a syrinx, you have Syringomyelia. That’s what they call it.
This is a rare spinal disease with no cure. Surgery or a shunt is the last resort since messing with the spinal cord is so risky. So, I will be dealing with the symptoms and trying to manage them for the rest of my life.
How did I get this syrinx? Half of the time people with Chairi Malformation get syrinx’s but I don’t have that, so either I was born with it, it happened during some kind of trauma to my neck, or it’s just idiopathic. In my case it’s probably idiopathic but who knows? I’ve never had an MRI until now.
I have read so many horror stories online while looking up information about this disease. So many people suffer from it but so many doctors, including neurologists, are under-educated about this disease–and then they tell their patients that their pain is either all in their heads, or isn’t coming from their syrinx. In the end, these people suffer.
The neurosurgeon didn’t say much to me about the syrinx except to say it’s in the watch and wait stage (to see if it gets any bigger) but didn’t like the results of my EMG/nerve conduction test and referred me to his colleague—a neurologist. There were other problems indicated on that test. One thing was an “upper motor neuron dysfunction.” He assures me that he wasn’t dumping me, but that neurosurgeons operate—neurologists do everything else. I do have to get MRIs every 6 months to watch the little bastard.
So anyway, I still don’t know FOR SURE what my symptoms are caused from? Is it only the srynx or is it something else?
The worst of this is that after all of the testing I’ve already gone through, I’m probably still at the beginning of this journey—to find out exactly what’s wrong and then how to treat it.
I have to get my 6th MRI next month on the thoracic part of my spine to check for sryinx’s there—which I find a little funny since my mid back is the ONLY part of my body that doesn’t hurt. The lumber area has stenosis but no srynx that I know of.
So anyway, that’s where things stand for now. I’m looking forward to the neurologist appointment on the 4th to see what he has to say.