My New Normal

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.

 

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March 29, 2018

Thank you so much for sharing about your experience. I have been working in the hospital since 2005, I have been a nurse since 2012, and I am currently an RN in an ICU. Throughout my years I have worked alongside neurologists and neurosurgeons, and with patients with ailments regarding the back, and at times the nerves (never the exact myriad 🙂 sorry I had to add that in here) that you are experiencing, but complicated and individualized, nonetheless. Oftentimes I have been the nurse who sends patients home without an answer, and an educational handout about “Back Pain” or “Living with your back pain,” type of thing.

With all of that said, I have never heard of this Syrinx or Syringomyelia. I am currently in my first semester of graduate school to become a nurse practitioner, and I have not studied the Neurology sections yet or taken neuro specific classes yet, but, in nursing school – My associates or bachelors degree, I did not learn about this.

So for them moment, thank you for sharing, and I believe that spreading awareness is a great thing for you to do. I will do my own research as well so that I will be prepared in the case I come into contact with anyone experiencing unexplained spinal/neuro symptoms.

And I will keep you in my good thoughts/prayers.

March 29, 2018

Thank you for educating me about Syringomyelia.  I’m so glad you finally have a diagnosis after looking for one for so long.  Unfeeling doctors who don’t believe their patients make me mad.  And doctors who feel they know everything makes me mad too.

March 29, 2018

My husband was diagnosed with ankylosing spondylitis (an inflammatory arthritis that affects the spine, but also tendons and other parts of the body) this year after roughly two years living through back pain that we could not identify a source of. Well, this because of doctors seeing no disk issues, shrugging and telling him to “go do PT.” Finding a good doctor is like finding a needle in a haystack! He had a knee injury that never healed that took one useless doc and PT to find a very competent one and his current awesome PT (who treated his WHOLE BODY imagine). From here he got referred to a spine specialist who told him “stand up straight” on his first visit…he was there because his upper spine was starting to hunch. Finally got a good one, a rheumatologist and a diagnosis. Without his mom being an RN I have no idea if he’d be diagnosed and being treated yet.

I am so happy you got a diagnosis fairly quickly given the medical system we have to navigate, and then get them to really hear you/look into it!! It’s maddening when they can’t give you an answer or worse tell you it’s in your head or clearly something it’s NOT. *HUGS*

March 29, 2018

Bless your heart! I kind of hate and distrust neurologists. Have had two of them jerk me around over what appears to be MS (my doctor is convinced that is what it is). One actually TOLD me on the phone that I have MS. Later, he stated in all my papers that I am 100% neurologically sound. Uh huh. I hope things improve for you.

April 4, 2018

So many doctors possess no sense of how to treat “real” patients We are just textbooks to them. I too know my current symptoms are “real” and not in mt head.But I can’t get that through to anyone right now. Meantime I live with them I’ll write something about them later Take care.