Multiple Sclerosis & Syringomyelia in My Body!

Here is the short version of my M.S. & Syrinx story. I’ll call it Part 1.

I had tingling, leg spasms, weak muscles, vertigo, and severe fatigue off and on for about 12 years or so. Probably other symptoms I can’t think of right now…OH, oh, like Costochondritis, blurry vision, creepy crawly skin, electric shock in my feet and torso, and some other stuff. I’m very active I never really followed-up with the symptoms on a serious level. I figured I had the flu every couple of months for about four to six weeks each bout.

What sent me to the doctor was this weird sunburn like feeling between my shoulder-blades that has just gotten to be completely unbearable over the last three months. I decided to go see my mother’s Alzheimer’s neurologist because he is the head of a department at a swanky hospital here in my city. (And you know, swanky must mean he is good, right? I jest 😉 ) I offer him my symptoms and straight away he said, “M.S. for sure is my thinking, but please have an MRI as a formality.” In the MRI results not only does he find M.S., he finds this Syrinx that extends from T1 down to my Lumbar area. The MS is a pain in the budinsky just by itself. The Syrinx is now completely inconvenient because it is so long and full/thick in most places, that it might actually be causing additional pain, numbness, and vertigo. And in addition to that I am told I can’t kayak, do a lot of strenuous yoga positions, or swim vigorously. What?? Holy mother of… I’ll be a fatty in no time.

A syrinx is a sack of fluid, a cyst rather, that in my case has resulted from either a trauma or meningitis or a tumor, and over the years I have continuously damaged my back to the point where the Syrinx has grown larger and longer inside the spinal cord. It will continue to grow and fill with fluid until there is no more room for it which supposedly may cause the loss of the use of my arms or legs possibly. That could require a risky surgery. Apparently doctors dissuade surgery until the patient is almost at that paralysis point. So I’m just hanging tight with M.S. and the Syrinx for now.

P.S. I am 41 years old. How long could it take to be close to immobile? Can’t they just pull some CSF from around the cord to relive some pressure? I had a lumbar puncture last week and that little amount of fluid drainage made me feel AMAZING for about one week. The sunburn feeling was gone. Now it is back.

12 responses

  1. I have never heard of Syrinx but am also in my 40’s and somewhat recently diagnosed with MS. I like to stay in a semi state of denial and luckily my symptoms have allowed for this to some extent. Best of luck to you.

    1. Thank you. I might be in a quasi-state of denial as well LOL. And then I figure life is short anyway so I’m going to live it and love it.
      I like your blog.

  2. hello and nice to meet you. I found you through Fae who has nominated you for the One Lovely Blog Award. I have recently read about a doctor who has gone from a wheel chair from MS to riding his bike for miles. He has done this from juicing.
    Here is the link.
    http://www.thewahlsfoundation.com/dr-wahls-gives-tedx-talk-on-overcoming-multiple-sclerosis/
    Much love,
    Sindy

  3. Hi Sindy,
    Yes, yes! I have researched Dr. Wahls extensively. The diet plays such an important role in our well-being, not only physically, but mentally and spiritually as well. Food cleanses our body and really gives us a clearer mental picture.

    Thank you so very much for stopping by my blog. I checked out yours as well and I really like it. I have another blog and we seem to post similar topics. I enjoyed reading your posts.

    Thank you for the link to Dr. Wahls. I appreciate it.
    Take care,
    Chez

  4. Share me your other blog. please. 🙂
    Everything I think or want to post has been done, so I just do it anyway. You know these are the things that interest me, so I share and I learn, fun stuff. Have a great week.

  5. Wow, what a story. I think diet will have a really positive effect.

    It seems to me you are taking this on as a challenge. I think this is absolutely the best approach!

    1. Hi Anna,
      Yes, I am challenging myself. Since I am surrounded by so many influential people in the health & fitness industry, I realized I am the only person who can advocate for my health. I am the only person who makes the choice when, where, and how to exercise. And the only person who cares or selects what to put in my body. So I figured if all the influential people in my life can do it for longevity, then I must be able to as well.
      I really enjoyed looking through your recipes and am looking forward to trying some of them! Thanks very much for your encouraging words.
      Chez

  6. Hi, how are you doing? Well, I hope. I have had and do have several health issues too and my surgeons assure me cheerfully that anyone of them will kill me long before the brain turmor (which was surgically removed) has a chance to grow back! Ha! That’ll show it! But the good times keep rolling along. I invite you to check out my blog “mindsurfers.wordpress.com” which features and highlights self hypnosis with an emphasis on self healing and improvement. I have had some good results with it. There is much excellent material out there and on the web for this. Mine is free but so is much else out there. Please let me know if you do and if you think it is the pure tobasco or I am full of something dank and nasty! My thoughts are with you!
    Your pal,
    Steven Narbonne

    1. Hi Steven,

      I am so sorry to hear about your health issues. Hopefully the information we both share will benefit each other, and others too. LOL – pure tobasco – I’ll check that out. Be well and I look forward to perusing your blog! Take care.

      1. Well, I won’t tell the boss! Hope you enjoy the blog. I am dead serious about self hypnosis’ effects when properly utilized and would love to hear your opinion if you give it a try.
        LLP,
        Steven

      2. Don’t tell, do you have a “pet” name I could address you as other than “don’t tell”? That one is kind of awkward.
        Hey, my health problems are not to be concerned about! Know why? Here’s why: because I am happy. That’s it.
        I know plenty of folks in rather good health who, none-the-less, are not happy and so what’s the point of being in good health? They might as well be in sucky health. Then they would at least have a legitimate reason to be grumps!
        None of my health issues is the equivilent to being on “the green mile”. Sure, I am going to bite the big one one of these days but who, pray tell, is not?
        Could be later today, or before I can send this post or years from now. I don’t know and don’t really care. I have now and that is all that I ask for. Oh, and friends like you! 😉
        LLP,
        SN

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