Finally something shows up..still left with no answers

[4happygnomes]

On my latest C Spine MRI, a "tiny cervical syrinx" was noted, so FINALLY something shows up after all these MRIs...but the neurologist is calling it "developmental and asymptomatic".  Which is mind boggling since I am VERY symptomatic. On top of the myriad of symptoms... I am struggling to walk ANY type of distance...even standing at the kitchen counter is difficult.

  Do I believe this "asymptomatic syrinx" is the reason for the 2+ years of steady decline?  Especially when it was not noted on 2 prior MRIs over the years when I was dealing with symptoms?  And from what I've read, no matter the size...doctors do not put much weight on Syrinxs and do not believe they cause problems.  Nor are there many doctors who even know anything about Syrinxs.  And the worst part of it all, is there is nothing you can do about them...I am so exhausted from this all.

Spent...physically, emotionally, mentally and financially.  I don't even know where to go from here, when the answer may not be even be recognized as the answer.  

Karen

[HVAC]

Remember people are individual. I have had MS for over 50 years. I was stabled for 40+ years now it is starting to kick in again. I have gait problems and My arms and legs jerk. I throw the phone by accident. I freaked myself when I was being diagnosed with MS I read demyelating and brain stem and freaked out. I had months until a doctor explained it. Hopefully you will have an answer sooner than later. This may be part of it.

Alex

[4happygnomes]

Thank you Alex, I'm steadily declining so at this point..a label of whatever this is would be so very helpful...to get worse without an explanation is pure madness!  I hope you are doing well!

[supermum_ms]

Please don't make the mistake of jumping the gun and assuming a "tiny cervical syrinx" has significance when it just may be too small to be affecting your spinal cord!

SM does have treatment options, so it's not true that SM is "not treatable".......if there are basically 2 different types and you don't have chari malformation, then from what i understand it's unlikely to be developmental SM, but a syrinx can also occur as "a complication of trauma, meningitis, tumor, arachnoiditis, or a tethered spinal cord. In these cases the syrinx forms in the section of the spinal cord damaged by these conditions. As more people are surviving spinal cord injuries, more cases of post-traumatic SM are being diagnosed as the syrinx can form years after the trauma."
http://asap.org/index.php/disorders/syringomyelia/


Try to keep in mind that for the syrinx to be 'the' cause of all your symptoms and require surgical treatment, it would need to be large enough to interrupt the signal that goes through your spinal cord just like any other spinal related symptom causation does eg MS/TM cord lesions, cord compression etc. The goal of surgery is to remove the pressure the syrinx places on your spinal cord and to restore the normal flow of cerebrospinal fluid (surgery usually cannot reverse 'severe' neurologic deterioration).

The questions i'd be asking if your appointment goes as your expecting (a) why hasn't this syrinx shown up on any of my prior spinal MRI's?  (b) If it's developmental and asymptomatic, why am i experiencing neurological symptoms at my age now? (c) If a neurologist looks for a neurological explanation of symptoms and finally finds something neurologically wrong, how can that potential explanation be so easily ruled out? (d) if this is 'tiny', what exactly makes this a tiny asymptomatic syrinx and not a tiny symptomatic cervical cord MS lesion?

http://brain.oxfordjournals.org/content/131/7/1776
interesting study on syrinx and MS  

It would probably be in your best interest to take a step back, IF reading other peoples scary syrinx stories has already got you scared or devastated for your future, your anxiety is more likely feeding, worst case scenarios and fear based thoughts are not "reality"........breath!

Hugs.........JJ

[4happygnomes]

Thanks JJ!  Interesting study on syrinx...a couple of people in the SM facebook page are also being "investigated" for MS.  From what I understand, surgery is a last resort and not very successful...many members on the other page have much larger syrinx then me and have been told surgery is not an option and that it is not the cause of  their symptoms.  So crazy when medical articles are published stating that syrinxs can/do cause symptoms..but doctors dismiss the patients reporting said symptoms!  

Yes, the follow up appointment with the neuro was a joke...she is way out of her league (her admission) and is referring me out...

I question the same thing...IF the neurological exam indicates there is something going on with my spine...and then "something" shows up on my spine MRI...how can they disregard the finding?  Ugh, ugh, ugh...on so many levels!    

She had not reviewed my 2 prior C spine MRIs (5/2014...12/2015) but is having the radiologist review the CDs and get back to me on whether the syrinx was there previously.  That will be telling!

I'm constantly told by the doctors that my vestibular damage was caused by a "virus"...which evidently so can a syrinx...so who knows??  Also, testing for the vestibular damage indicated that it was CNS pathology...which MS is, so again...who knows??  

What I DO know, is that I am failing...and the merry go round of doctors/appointments and no answers is exhausting.

[cjtmn]

((Hugs)) Sent you an email -- thinking of you.

Cheryl

[4happygnomes]

Thanks Cheryl!

[supermum_ms]

Hi Karen,

It is a bit of a puzzle....if this tiny cervical syrinx has been there throughout your life and is asymptomatic, why wasn't it visible or mentioned on your previous MRI's is a very good question....

I think the 'asymptomatic' part has probably got a lot to do with your symptom pattern and clinical signs not matching what's expected with a 'cervical syrinx' that is symptomatic.....sensory disturbance is typically asymmetric in a cape-like pattern over the shoulders and back, pain is frequently felt in the neck and shoulders and it usually starts with sensory and motor weakness in the fingers and hands, later signs include the shoulders, trunk, and even later it starts effecting the legs.

The more common associations when it's developmental is Scoliosis (abnormal spinal curvature) and 'Chari' (malformation of the lower part of the brain) Chari is also one of the MS mimics, i don't know much about syrinx beyond that., sorry!

One thing to keep in mind that when 'symptom progression' is caused by a neurological condition, the abnormal neurological clinical signs should be corroborating the decline, so IF the associated test evidence has been normal or stable during the same time frame, it's likely more of an indication that it's not due to an underlying neurological condition and adds weight to alternative causes. That's not to say the progression isn't happening, just that it becomes doubtful the causation is primarily neurological, if that makes sense.

HUGS........JJ    

[4happygnomes]

Thanks for the feedback as always JJ.  I'm meeting with the neurologist on Tuesday to go over the results. I do not have CM.  

I've joined a facebook group of people who also have syrinx/syringomeylia and I feel like I've "found my people".  It causes a lot of the same symptoms as MS...and some people have both a syrinx and MS.  Double whammy!   They are dealing with so many of the same symptoms as me...even a few who have vestibular damage...like me.   But yes, where was it on the other MRIs and why is it affecting my legs?

  I do get the corresponding neck stiffness and pain and my Spine feels like it is in a vice grip on and off...so, some of this syrinx makes total sense.  

"If" I had a choice between a syrinx and MS, I would pick MS..not that that is a great diagnosis...but a syrinx is very scary and not treatable..it just progresses while causing symptoms.  Didn't even realize it was a possibility, now devastated that this is my reality.