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Thread: New here: TM or Syringomyelia? Please help

  1. #1

    New here: TM or Syringomyelia? Please help

    I would greatly appreciate some feedback on what's going on with me, if possible. I stumbled upon TM information via a syringomyelia support group. I apologize for the length; I'm just very confused.


    I was not ill prior to onset symptoms. The only thing of any significance prior is a fall down the stairs in late May which resulted in a fractured coccyx. Everything went black and numb for maybe a second or two. --After fracture had time to heal, I was fine.


    Day 1: Early August, I had been sitting at my computer after feeling fine all day, when I felt my calves were very stiff. Legs felt heavy like cement when I tried to get up. Had shooting pain, weakness, and trouble lifting feet off the floor more than about an inch. I couldn't climb stairs due to weakness, shooting pain and heaviness in legs. Muscle spasms began within the hour.

    Two to three hours later: pins and needles in my toes, then completely numb. Legs were still heavy, weak, painful and spasming. I saw my GP later that day, and was sent home with muscle relaxers.

    Day 2: The numbness had moved all the way up to my knees by morning. Other symptoms were still there, too. I saw a neurologist that day who did a neuro exam and said I have a spinal cord issue, and he was guessing it was thoracic or cervical. He attempted to have me admitted to the hospital, and insisted that it was important that I get there in the next few hours because I could have something very serious. However, there was a miscommunication somewhere, and the hospital sent me home when I arrived to be admitted.

    (Other symptoms since onset include: urinary incontinence since onset, extreme fatigue, and loss of temperature sensation in back---waist area.)


    Three days later, I had an MRI on cervical and thoracic spine.

    Findings:

    Abnormal signal is seen in the cord extending from T7 to approx. T11. This is increased signal on T2 weighted images and does not enhance on post infusion images.

    Impression:

    1. Abnormal signal in the central cord in the thoracic spine as described. The differential for this includes non dialed syrinx vs. a dilated canal. No expansion of the cord is seen.

    2. No pathologic enhancement is seen.


    Neurologist said I have syringomyelia and it explains my symptoms.

    Few days later: severe burning pain in lumbar spine area. Also- extreme sensitivity (deep pain) to touch and clothing over entire back from just below waist to shoulders. (Allodynia?) I went back to my neurologist, and Chiari was ruled out via brain MRI. He sent me to a neurosurgeon to rule out a need for shunting syrinx. The neurosurgeon told me the syrinx doesn't explain my symptoms, and pretty much acted like I was crazy.

    I went for a second (third?) opinion with a fairly well respected neurologist, who also told me that my syrinx isn't causing my symptoms. He didn't tell me what was causing them, either.



    It's been two months, and numbness has mostly diminished, but the pain is still constant. My legs feel like cement blocks daily, and although I can walk with pain, I cannot walk very far. --I cannot go grocery shopping, for example, due to pain in my legs and back by the time I'm halfway through the store. I am not even attempting to push the basket, but just walking. The sensitivity on my back comes and goes, as does the incontinence. Water therapy seems to help with pain, land based doesn't seem to help at all. I have one more day of therapy left, and my PT keeps telling me something else is going on, and I need to get another opinion.

    I noticed some minor weakness and pain in my arms during physical therapy, but tonight, my arms are really burning and painful. I am 37 and a mother of two small children. I'm hobbling around my house in pain, and my children need me. I'm just trying to understand what's going on with me.

    My questions:

    1. Does this sound like syringomyelia, TM or something else entirely?

    2. If it does sound like TM, is it important to treatment/recovery/etc. to have the proper diagnosis?

    3. Finally, I am wondering whether a syrinx and TM look similar on an MRI, and the radiologist could've been mistaken? (I saw some images of both online, and to someone who has no idea what they're looking at, they look pretty similar to me.)


    Thanks for your time and patience

  2. #2
    Welcome to CareCure, Lynne. I don't have the medical expertise to answer your questions, and I know how frustrating it is to do all the right things as a patient - going to the appropriate specialists, getting second and third opinions - and still not understand what's happening. With neurological problems, especially, it is not unusual to be in that dilemma! Neurologists and neurosurgeons frequently disagree about diagnosis and causes of symptoms.

    I am hoping that you've had tests in addition to MRI, such as bloodwork and lumbar puncture. It's good that you're in physical therapy, regardless of what the diagnosis turns out to be.

    Pain such as you describe often persists even after mobility issues have resolved - a pain specialist might be able to help you.

    You might also consider seeing a physiatrist (a doctor who specializes in physical rehabilitation - not to be confused with a psychiatrist). A physiatrist trained to treat spinal cord injuries and neurological problems would be best.

    You'll find a lot of helpful, knowledgeable people here, and it's good you've found this place and are asking the right questions - keep after your doctors until they have at least explained why they are unable to give you better answers!

  3. #3
    Thanks for the welcome, Bonnette.

    My GP did bloodwork last week because I had some swelling for several weeks; he ruled out electrolyte, kidney, liver and thyroid issues. Otherwise, I've had no other tests besides the MRIs.

    Thank you for your suggestions about a pain specialist and physiatrist; I will look into both of them. I was considering going back to my original neurologist and asking whether this is TM instead of syringomyelia, but I wanted to make sure my thinking isn't way off base before doing so.

    Thanks again, Bonnette

  4. #4
    Lynne, your thinking is not off-base at all. You could be looking at TM, Guillain-Barre syndome, syringomyelia, or a combination of conditions.

    Additional bloodwork could help to rule out infectious and autoimmune causes of neurological problems (e.g., lupus, West Nile virus, Lyme's disease, celiac disease, and several others); lumbar puncture can provide laboratory support for many diagnoses, including MS. It sounds to me as if more diagnostic work needs to be done, and that you are owed a more detailed explanation of where you stand in this process.

    I know you have had MRIs of your cervical and thoracic spine, but have you also had MRIs of the brain and lumbar spine? If not, this would be one of the first issues I would raise in an appointment with your original neurologist. The reason for this, is that neurological diagnosis is very often made on the basis of exclusion of various factors - so the entire nervous system needs to be assessed.

    Best wishes with this, and keep us posted.

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    You need a neurologist to get the blood work you'll need. Has anyone mentioned a babinski reflex? Have you been put on a course of steroids? I'd go back to the first neuro and ask for him to admit you for further testing. And yes, some TM presents like your history but so does Guillame Barre Syndrome and Lupus. Ask for follow up with a neuro-urologist also. Where are you located--in general?

    Quote Originally Posted by Lynne 2 View Post
    Thanks for the welcome, Bonnette.

    My GP did bloodwork last week because I had some swelling for several weeks; he ruled out electrolyte, kidney, liver and thyroid issues. Otherwise, I've had no other tests besides the MRIs.

    Thank you for your suggestions about a pain specialist and physiatrist; I will look into both of them. I was considering going back to my original neurologist and asking whether this is TM instead of syringomyelia, but I wanted to make sure my thinking isn't way off base before doing so.

    Thanks again, Bonnette
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  6. #6
    Bonnette--when I saw my neuro at onset of symptoms, he mentioned GBS, but said it wasn't that. MRI of brain was done to rule out Chiari, and he flat out refused to do lumbar MRI because, "it won't change my management of your case." I did ask for one. Thank you for the ideas; I may just have to look for yet another neuro.

    Sue--my babinski reflex was checked twice. The first time was iffy, and when he tried again, he said it was normal. I have not been put on steroids. However, he did try to admit me initially, but when I arrived at the hospital, they had no record of admission and sent me home. --He never sent me back. I believe he ruled out GBS because I had not had recent respiratory or GI issues. I appreciate your advice and will follow up. I am in Detroit suburbs.

  7. #7
    You are close enough to Mayo Clinic (in Rochester MN, about 630 miles from Detroit) that - if you can afford a trip in terms of time, expenses, and arranging for care of your family - it might be worth a visit. I have no need to go there at this point, since my diagnosis is now established; but early on, Mayo opened a file for me (per my telephone request), in case I ever needed them. If you don't receive satisfactory answers where you live, Mayo could be a help for diagnostic purposes - with their team approach, it usually only takes 2 or 3 days for them to assess a patient's situation. Once you have a diagnosis, you can make informed and intelligent treatment decisions; until then, you'll be in limbo and that's an uncomfortable place to dwell. Here's a link.

    In your shoes, I would wonder how the neurologist could possibly have determined that a lumbar spine MRI would not change the way he treats you - without even knowing what the MRI would have shown! Ruptured disc? Lesion? Information is power! Neurological disorders are notoriously difficult to diagnose, and assumptions are not useful.

  8. #8
    Thank you for the suggestion. I really have no idea how I would be able to afford it, but I will certainly keep it in mind in case this drags on with no real answers. Limbo is a very uncomfortable place to dwell, as you said.

    Quote Originally Posted by Bonnette View Post
    You are close enough to Mayo Clinic (in Rochester MN, about 630 miles from Detroit) that - if you can afford a trip in terms of time, expenses, and arranging for care of your family - it might be worth a visit. I have no need to go there at this point, since my diagnosis is now established; but early on, Mayo opened a file for me (per my telephone request), in case I ever needed them. If you don't receive satisfactory answers where you live, Mayo could be a help for diagnostic purposes - with their team approach, it usually only takes 2 or 3 days for them to assess a patient's situation. Once you have a diagnosis, you can make informed and intelligent treatment decisions; until then, you'll be in limbo and that's an uncomfortable place to dwell. Here's a link.
    I'm with you. I'm no doctor, but ignoring the lumbar area makes no sense to me. My PT doesn't understand the logic, either. I am very uncomfortable when I don't have all the information, because as you've said, information is power.

    Thanks again

    Quote Originally Posted by Bonnette View Post
    In your shoes, I would wonder how the neurologist could possibly have determined that a lumbar spine MRI would not change the way he treats you - without even knowing what the MRI would have shown! Ruptured disc? Lesion? Information is power! Neurological disorders are notoriously difficult to diagnose, and assumptions are not useful.

  9. #9
    I know, it is expensive and inconvenient to travel for medical purposes - so frustrating! I hope you'll be able find a neuro closer to home who will keep peeling the diagnostic layers. In the meantime, you're doing what you need to do by going to PT and considering ways to get more information. I wish the process could be more straightforward! It seldom is, with neurological issues, and that seems to be the nature of the beast.

  10. #10
    I have syringomyelia and early on my legs felt like I was trying to lift cement blocks to walk especially after standing in place for any length of time or if I had a few drinks. That was exactly how I explained the feeling in my legs to my neurologist. The main part of my syrinx was in upper thoracic spine.

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