MS and the Syrinx… What About Them? Find out here

Multiple Sclerosis and Syringomyelia. Many people already know what MS is, but not a lot of people know about Syringomyelia. In the United States, approximately 400,000 people have Multiple Sclerosis and approximately 40,000 people have Syringomyelia. Worldwide, the number of people affected by Multiple Sclerosis is around 2.5 million people. The number for Syringomyelia is a little more shady with estimates as low as 40,000 people all the way up to 500,000. Whatever the numbers, both affect the spinal cord. Both can be exacerbated by inflammation. Both are debilitating.

My experience working in the health & fitness industry with countless people who have impacted the world of healthy living has given me so much knowledge and insight over the years. I have gained a passion and enthusiasm to live a healthy life through nutrition, exercise, spiritual connections, social activity, and education. And now, I will use all of that knowledge to do all that I can to manage the symptoms of MS and Syringomyelia. I would like to share with others bits and pieces of what I have gleaned from the experts in my field. My hope is that whatever I share here will inspire others to live healthier lifestyles as well.

11 responses

  1. I hope you are cool with ‘Awards’ because you have been nominated (by me) for ‘One Lovely Blog Award’ !!!

  2. I am glad I found your blog. I have a syrinx (hydromyelia) (shown on spinal MRI) and possibly MS (suspicious brain MRI, bilateral foci in juxtacortical area). Due to no insurance or money, it is very hard to find a doctor to treat these conditions, and I owe thousands to the hospitals who have done these MRIs for me as a self-pay patient. I have called the ASAP society and they are sending me information in the mail, plus information about Social Security Disability (a judge recently denied me even with the syrinx). I also called the MSAA and am waiting for a call back from them. I will be subscribing to this blog. Thank you for putting the information out there to help others.

    1. Hi Diane,

      I am so very sorry to hear about your diagnoses. This is such a drag. On one hand, MS is a good thing to have as it is treatable and Syringomyelia is not. On the other hand, Syringomyelia might be the better diagnosis because nobody knows how debilitating MS could get for someone. Either one… stinks.

      There is a great paper written about Syringomyelia by Drs. Battendorf, Ellenbogen, Benzel, Ferrante, Green, Menezes, and Speer. It is called Chiari Malformation and Syringomyelia, A Handbook for Patients and Their Families.

      It is a hefty PDF download, but worth the read. Apparently there are three distinct categories of “Hydromyelia” which are:
      Chiari Malformation – begins in the base of the skull and usually develops in the womb/at birth. It sounds rare that an adult would be diagnosed with that as our parents would have known when we were babies or very young children.
      Syringomyelia – a small water pocket that is the result of a traumatic injury to the spinal cord, (or can also possibly be created at birth.) I was told that it is generally the result of an injury and not something that is developed at birth. More common diagnosis in adults.
      Hydromyelia – which is a water in the spine additionally with water in the fourth chamber of the brain. Usually developed at birth.

      I do not have option one – Chiari, and I do not have option three, a water pocket in one of the chambers of the brain.

      Don’t quote me on those definitions, but that is what I have come to understand from all of my reading and speaking with doctors who specialize in this little-known disease. I live in Los Angeles and there is one doctor who specializes specifically in Syringomyelia — Dr. Batzdorf at UCLA. He is a surgeon and only sees patients who are candidates for surgery. I have seen other doctors here in L.A. only to be told they are so unfamiliar with this disease that I am now headed to Palo Alto to see Dr. Paul Jackson at Stanford Medical. He seems to have a little more options with treatment and relief of the condition that do not require such dramatic surgeries as full shunting. There are about 15 doctors in the U.S. who are extremely familiar with this – about half are between the Mayo Clinic and Cleveland Clinic.

      My water pocket is from the top of my C-Spine to the end of my Thoracic. It is becoming inconvenient. I’m seeing an MS Specialist here in L.A. as well to determine if indeed MS is a proper diagnosis or if the Syrinx has created “holes” in the spinal cord which mimic lesions. My radiologist thinks the MS lesions are actually holes. That doesn’t sound very good either.

      Two of three doctors have told me the diagnosis of MS on top of Syringomyelia is probably not accurate because Syringomyelia actually causes the almost the exact same symptoms as MS. Unfortunately, there is no relief from Syringomyelia except surgery and most doctors will not do a spinal cord surgery until you have become incontinent or cannot use one or more of your limbs.

      I take Gabapentin for the nerve pain and spasms, but I have severe muscle pain and weakness on the right side of my body. Not sure if that is from MS, “holes” or the Syrinx.

      Hopefully, any information I find and post will help you. It’s a tough diagnosis to find information about that doesn’t direct you to Chiari or surgery.

      Warm regards to you.

  3. I live in a rural area of SC where there aren’t any specialists for Syrinxes or MS. I wish I had been diagnosed before I moved here six years ago from NY, where there are probably alot more specialists. But travel anywhere is a problem right now, both for financial and health reasons.

  4. Hello! I came across your blog while searching for a connection between MS and SM. I have SM and doctors suspect I may have MS as well. I have many symptoms which are reg flags that are common in MS but not in SM such as the MS hug which is by far the most debilitating of all my symptoms. I have read that people with SM have a 4-5% increased risk of MS and also that SM can often be misdiagnosed as MS and visa versa. I was wondering how long it took for you to receive the diagnoses of both. Thanks and take care.

    1. Hi Faith,
      I am so very sorry for not responding sooner. It took almost 10 years for a diagnosis. My neurologist diagnosed MS and then after looking at the CT Scans said there is a large syrinx in my spinal cord. He said that might be worse than MS because there is no medication for Syringomyelia. My first symptoms about 10 years ago were leg numbness and dropping things, dizziness and blurry eyes (but I have 20/20 vision), and a few other odd things that could never be pieced together until the CT Scan of the entire spine. Like you, the MS Hug was incredibly debilitating. My regular doctor diagnosed it as Costochondritis, and the neurologist later said that while neurologists (at least this one) consider the MS Hug and Costochondritis two different things, they actually have the same symptoms. HA. It begins at the sternum in the ribs and can wrap around your torso. I do know from the Mayo Clinic that Costochondritis does not mean you have MS, nor that you will ever develop it. It can be brought on by trauma such as a fall, the Heimlich maneuver, and other trauma that causes the cartilage between the ribs to become inflamed and swollen. Logically, any trauma like that could also potentially cause a Syrinx to form, mimicking MS symptoms. I do urge you to check out Costochondritis on the Mayo Clinic website and the Cleveland Clinic website. Go back to your neurologist and ask a lot of questions. Be your own health advocate. Sometimes, if you don’t ask they won’t offer the information due to time constraints and moving on down the patient factory line. 😉 Take care of yourself and let me know how you’re doing.

  5. I enjoy your blog. I have hydromyelia, but it is an unusual case as it juts out wider in two places at t-4 and t-6. I have the tell-tell signs of MS (lesions on the spine, lesions on the brain etc.), but came out negative for MS. The neurologist said that is good news and bad news as he could treat me pretty well for MS, but not hydromyelia. It has been progressive and I am losing function in both arms and legs, but everyone has told me surgery is too risky because of the location. I appreciate your outlook having both conditions and have visited your blog often.

    1. Hi Bruce,
      Thank you so much for your comment. I apologize profusely for not responding sooner. Summer was very busy for me and I have lapsed in my posting. Anyway, I hope you are well and I am glad you enjoy my blog. My hope is that maybe people out there will relate to what I’m saying because this is such a strange disease (?) that sometimes it feels like we are our own little island. Take care!

  6. I was diagnosed MS 2013 / Syringomyelia 2010 (now runs from C3 to T8)
    I believe I may be the only patient in my neuros practice with both.
    My neurologist for MS has told me many times that my symptoms may be from Multiple Sclerosis or Syringomyelia. Should I try to find a doctor with experience in SM? Most doctors offices act as if they have never heard of this before. I feel like she pushes gabapentin as a cure all- encouraging me to take more and more. It is a terrible drug and dealing with cognition issues already I had to finally stop taking it. I only take my DMD pill twice daily and have abandoned all other meds. I really can’t stand the side effects of most everything she has put me on.
    Do I need multiple doctors?
    Thank you for your help.

  7. Hi
    I have a large thoracic syrinx from T6 to T12 occupying 75 percent of the chord. i had a fall at my place of work . I have not worked since about 3 months after the fall. My symptoms are progressing worse and worse. I mostly wake up in extreme pain with what can only be described as a serious squeeze. I feel like I’m a bear hug from someone who is as strong as ten gorillas. I can barely walk at times and have tingling in the outside of both hands. My eyesight has deteoriated but i am 47 as this could be normal. I was just reading about MS and my symptoms are so similar. I have major problems emptying my bladder and as you probably know it is easier to get info of MS than it is on SM. I know I have syringomyelia but was wondering if I also have MS or is my syrinx just causing MS like symptoms. As the syrinx can damage the same parts affected by MS. My symptoms are getting to the point of being very scary and very limiting. I have lost my job( and could never work on the tools again) and I have also lost my ability to drive. Although losing my license because of this condition and the medications is the best thing(as i do not want to hurt someone in an accident) But i am just scared that this is going to incapacitate me moving forward. Thanks Steve

  8. Hello y’all.
    Phillip is the name, being in total denial is my game.
    The more I deny, the longer I last.
    PTSM. No chiari, no ms, non communicating. 50% mid thoracic. C2-t10
    61 and a half yrs, with a full head of hair. I only look 60 at fifty paces though.
    I have lasted 20 and a half years with sm, and I still have ridiculous sense of
    Gradual loss of power, and big probs heart, digestive, skin, mouth muscles still work a treat. Some say far too well.
    Biggest problem I have is I get no help from docs, and am denied support from neurologist. If I had ms, I would be supported,
    The abuse I have suffered from insurance companies is unbelievable, because I got my syrinx from a fall at work. The fraud and deliberate perverting of the course of justice is breathtaking!
    So don’t come to Australia if you have sm, you will get treated like a leper, if you have ms, you will get great support.

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