Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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Brain & Nervous System
/ Syringomyelia Support Group

Newly Diagnosed

empath777
empath777

I haven't actually been formally "diagnosed" yet, but just got my MRI results back today, and have 3 syrinx on my spinal cord. One in my cervical spine, and two in the thoracic region. I've been having (MANY) symptoms for the last (almost) 5 years now, and have been diagnosed with Fibromyalgia, Adrenal Fatigue Syndrome, and my PCP also suspects that I may have MS, which I must admit, I've also suspected, so much so, that I have been begging her for a referral to a Neurologist since last November. She finally relented to ordering the MRI herself(w/out MS protocols interestingly enough, since that's her suspicion), and finally got the results back today...I asked for a copy, came home, and immediately started researching.


I have many things going on, but must say, that this is the most troubling; even more so than the "lesion" that could mean a lot of things including MS or an old stroke. All five of the regions(brain to tailbone) that the MRI covered, said that further MRIs, most with contrast this time, and some more powerful were required...I'll definitely pursue everything, and get to the bottom of it all, but this Syringomyelia is terrifying. I thought the possibility of having MS was the worst case scenario, first because I'd never even heard of a syrinx/Syringomyelia and how bad it can get, but that it seems that it could possibly be worse than Relapsing Remitting MS, which is the form that I would have, based on my history and symptomology. Correct me if  I'm wrong...


Can anyone help me understand what to expect from here. Testing, treatments, etc... Any help would be greatly appreciated! 

erin22
erin22
I have a Chiari Malformation and SM had decompression surgery in 1992 which reduced my syrinx however I have chronic pain, some days better than others. Once the nerves were damaged you end up with chronic pain. I have been treated with Effexor ,Neurontin and over the counter meds. Depending on the weather , stress , sleeping habits I have good days and bad. Plenty of rest , coping skills for stress, massage, exercise, but not a lot of straining is a great relief. Better to fix the problem then let the nerve damage occur
empath777
empath777
Thank you for the reply and advice @erin22! I've been doing alot of reading, and am starting to feel quite discouraged, since it seems that the medical community is pretty ignorant about SM. I have suffered pretty horribly over the last 5 years, and now I'm quite terrified about what the future holds with this new revelation...
flowerqueen
flowerqueen
I've been diagnosed with syringomelia. Went to ortho for shoulder, arm, neck, wrist , hand pain. EMG had some cubital tunnel, rheumatoid factor and specialist ruled out. Urinary frequency ( every hour) with no "urinary problems" per the urologist. Neurosurgeon doesn't think syringomyelia is cause if any of my symptoms said risks out Weigh benefits for surgery. Keeping an eye on my 4cm thyroid nodule. My MRI with contrast showed no mass meaning no cancer . Pt and cannabis and counselor help a great deal. Dealing with this 4 years. Have FMLA . Miss work average of 2-4 days a month sleeping all day Type of Recovery . Suffer chronic migraines, syrinx is In lower cervical upper thoracic (low neck area). Feel sharp pain throughout entire right arm mostly but both arms , shoulder into hands numbness tingling. Burning ontop of arm from hand to elbow . Twitching muscles from elbow to shoulder. Wrist pain . Also shoulder and back pain. Neck pain varies . Thoracic spine pain. bulging disc lower spine. Some sciatica numbness pain down entire right leg. Sigh there is more.