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  • Could these symptoms be Myelopathy?

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    Old 12-18-2006, 12:19 PM   #1
    daleaherman
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    Could these symptoms be Myelopathy?

    Hi,

    Over the past year, I have had wierd symptons that I initially thought were the result of an infection. Now, my PT (for lower back/leg pain) has suggested that I may have a Myelopathy in my Cervical spine.

    Burning in forearms
    Tingling in hands
    Numbness on one side of face (tongue too).
    Some pain in one arm
    sharp pricks in back/chest
    pain in legs (like tightening muscles in feet),
    ringing in ears, dizzyness, full sensation (all together),
    trouble focusing at long distances, patterns - one eye twitching?

    One shoulder/neck gets severe pain (on occasion if I attempt to sleep with it over my head). When I was exercising during remissions, I had trouble pushing weight forward and up with it, but not dips? Hurt at shoulder/neck?
    Sometimes, my legs feel week, but I can still do stuff. My PT said that one arm/hand was weaker than the other. Not terrible, but noticeable.

    I had a couple of odd bolts at night (while lying on back), when my whole side twitched (is this that lightning bolt syndrome). This has only occured a few times and only when lying on my back.

    Now, these symptons come and go. Mostly at once.
    Some exercise makes them go away, but then they come back worse...
    Sometimes NSAIDS help (Ibup, Naproxin). Sometimes not.

    My neck also makes much more noise than it used to when I move it...Not always...

    Thanks for any help here... My former Neurologist did an upper MRI, but didn't even suspect any spine injury? I kept asking.. I think he thought I was crazy. They sent me to a Rheumatoid guy, but nothing was found...The PT was the first one to say that I need to have my neck looked at ASAP...This is almost 9 months after my first complaints.

    Pain is only about a 3-4 (sinus/migraine a 7-8), so I am living with it, but it is taking me away from life! Much depression!!!

    I really feel for everyone on this board!!!

    Thanks,

    Dale

     
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    Old 12-18-2006, 01:22 PM   #2
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Yes, some of these could definatly be signs of some sort of stenosis (one of them being myelopathy) going on in your neck, and being that its been 9 months since your last MRI from what I can gather, more could have happened since then. Its possible that the Physical therpay is making it worse. It helped me initially and then excersies made it worse, so she limited to massage, and then finally wouldn't do much of anything because of the tingling and such that I was having because she didn't want to make things worse. Get another MRI done and go see a NeuroSurgeon, he would have more insight to the serverity of your problems most likely as far as spine issues go. Some people like to go to orthopedic surgeons as well. If you don't know a good one, do some investigating and perhaps pay a visit to a couple surgeons to get their opinons, You primary doc or your neurologist might know of some. This doesn't mean that the surgeon is going to rush you off to surgery right away, he may try other conservative means first, but, it sounds like you are steadily getting worse, which can very quickly turn into getting even worse quite quickly. I would advise you to get a copy of your reports so that you can get to know exactly what is going on inside of you.

    With the vision problems and ringing in the ears however, this could a few things.. it could have to do with what is going on with your spine, but it can also mean other things as well. So you may want to see your primary doctor and ask to have your Tyroid checked via labs such as a TSH, T3, T4, and maybe even a cortisol lab checked to see how your adrenal cortex is doing and perhaps an MRI of your head (rule out tumor) and an xray of your head (to rule out sinus infection). I'm no expert on this stuff, I'm not a doctor, but it may be worth suggesting or asking for, or just plain asking the doc if he thinks it would be good to check out just in case, or just to give you peace of mind. If doc says its not necessary, but you want it done, tell him that you would like it done anyway for your peace of mind. But as far as your neurologist - You have a right to know and to ask questions with any doc, and when in doubt, get a second opinon. Good Luck to you and God Bless, I hope you figure things out soon.

    You may want to stop excersies with your physical therapist until you know what is going on so that you don't get worse. You may want to speak with your primary doc about all this stuff so that he can get you on the right track.

     
    Old 12-18-2006, 01:27 PM   #3
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Also, once you see a surgeon and they look at your films and reports and if they still don't see anything obvious that could be causing your pain, you could suggest having a discogram done, sometimes those show more things than an MRI can. A discogram can at times pinpoint the source of your pain.

    Also, some docs will try giving injections to help block the pain you are having before trying surgery.

     
    Old 12-18-2006, 01:29 PM   #4
    daleaherman
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    Re: Could these symptoms be Myelopathy?

    Thanks for the quick reply. Today, my arms are fine, but my left leg aches badly. I have some pin pricks in my groin. My PCF is worthless, as was my neurologist.

    I am very scared...Guess that I should start seeing a pyschiatrist too...Vision could be stress/anxiety causing twitching...I also had leg fasciculations. Maybe stress or my back issues or?

    Last edited by daleaherman; 12-18-2006 at 01:33 PM.

     
    Old 12-18-2006, 01:37 PM   #5
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Yes, it can be scary, but getting this help is also a good thing. Try to look at it as the beginning of getting yourself to feel good again. First things first, get yourself some new docs, but do it ASAP. I'm telling you this based off my own experience, becuase if you start to go downhill all of a sudden you will still be waiting a while before some treatments can occur in some instances, Make some calls today if you can, and tell them you need to be in ASAP and this can't wait due to your condition. Its possible you could just see one of the other docs within the same group at the offices you've already been going to, so you may not have to look far. You can even ask to speak with the doctors nurse to see if they can get you in sooner if you can get in within the next couple of days.

    I'll also say, that my primary doc had me do my mri and then do physical therapy, and then I was to see him again in 2 weeks to get results. YOU already know that physical therapy may be making things worse, so if you get your tests done, ask to follow up as soon as possible. Most reports and labs can be read within a couple of days.

     
    Old 12-18-2006, 02:04 PM   #6
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Also - Based on what you are saying, I would be highly suspicious that is all due to something going on in your neck. I don't know what they MRI'ed before, but if they haven't checked your neck yet, I would put my money on that, because many things going on in the cervical spine can manifest with problems in the lower extremities... as well as the tingling and numbness in the face.

    I had many of these symtoms, and even worse than this, My legs started giving out on me, and my problem was at C5-C6 in my cervical (neck) spine.

     
    Old 12-22-2006, 09:10 AM   #7
    monarog
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    Re: Could these symptoms be Myelopathy?

    Hi,

    Me again...with my horrible neuro symptoms. I am starting to wonder if there's more to this than my bad neck. I am getting so frustrated and giving up hope with all of this. As many know, I ruptured at c6-7 15 months ago (no surgery). About 5 months after that, all the neuro stuff started and the neck and arm pain intensified. So, 10 months I am still dealing with it all. My current symptoms:

    hyperreflexia
    nerves to arms and legs just feel shot, on high and jumpy all the time
    intermittent dizziness, ataxia, balance is off
    tongue numbness/burning/soreness, off and on
    bilateral facial numbness a couple of times
    lots of muscle twitches
    numbness in feet, sometimes up the legs
    when the nerves are on super high it causes hands to tremor, sometimes legs will tremor, even noticed tongue tremor once or twice
    LOTS of neck pain, arm pain
    I've developed high blood pressure, it was always low prior to this

    I'm sure I'm forgetting something...but, that's the most of it. I have seen 3 neurologists, 2 neurosurgeons, one rheumatologist. I've had bloodwork, spinal tap, EMG/NVC, Brain MRI w/ contrast, Spinal MRI - all "normal" other than my herniation and some narrowing (9mm) at the herniation site. I'm getting desperate and giving up hope. They say my disc is improving (so doesn't need surgery - why do I have so much pain after so long and now all these horrible symptoms?). Any ideas of where I should go from here? I am SO sick, everyday. Yesterday I thought I was going to pass out, though didn't. I'm feeling very frustrated and my neck is killing me. I feel like my life is passing me by, I have 3 kids and until all of this, was very active, ran 20-30 miles per week. Now I'm a pile. Thanks for listening. Mona

     
    Old 12-22-2006, 09:23 AM   #8
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    have they done an MRA (a is for angio) of your Neck and Head?? How about a Spinal Tap? How much of your spine did they look at?

    have you gotten your reports to read for yourself?

    Please don't give up hope, just be persistant, somethings gotta be found soon. Are they looking for Auto immune diseases? Perhaps they need to just start consulting every sort of doctor for you to try and get this figured out. I'm so sorry this is happening to you. God Bless you, I hope a diagnosis is found soon..

    Last edited by PearlDoves; 01-12-2007 at 07:30 PM.

     
    Old 12-22-2006, 09:24 AM   #9
    daleaherman
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    Re: Could these symptoms be Myelopathy?

    Hi Mona,

    Your post brought tears to my eyes. I have the same symptoms. Like my nerves are super excited. Some days, I have little pain. But some days, like today, my arms and legs ache... My neck rarely hurts??? But sometimes, my whole head feels very heavy and I get dizzy. Sometimes, my legs feel very weak. I think since they are in constant twitching. Sometimes, the area between my shoulder and neck hurts. The only thing that keeps me going are my three kids too. I had four days in Sept. with no pain??? Then I started to swim and all the pain came back with a vengence. I didn't know at the time that my problems may be a disc issue.

    FINALLY had a neck MRI today. It took nine months of constant complaining for of the doctors to recognize that it may be a disc problem. He is still not convinced this is the cause, but I KNOW BETTER...
    My fear is that there is really nothing they can do...

    Have you tried PT?

    Best Wishes!!!

    Dale

     
    Old 12-22-2006, 09:26 AM   #10
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    With the High blood pressure, have they referred you to a cardiologist?

    You may just wanna go to the ER and tell them you're not leaving until they find something and you're able to get some relief... This might mean getting admitted for a while so that they can run lots of tests.

     
    Old 12-22-2006, 09:28 AM   #11
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Also, have they done a regular MRI of your head at all?

     
    Old 12-22-2006, 09:34 AM   #12
    monarog
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    Re: Could these symptoms be Myelopathy?

    Thanks for words of encouragement. I am crying as I type as I am so sick and so emotionally fragile right now as I'm just so tired of feeling so awful. Yes, had "normal" spinal tap. The rheumatologist didn't seem to think it was an auto-immune problem...his words..."I don't know, but I would guess somehow your herniation has triggered/created this problem with your nervous system." But, now what? Is this my life with no help? That's what I am most scared of I think. No MRA done, though the neurologist listened to the arteries in my neck with his stethascope. No PT at this time. At the time of my original herniation 15 months ago, the NS didn't want anyone to touch me as he said it was a "large" rupture and he feared they would aggravate it further. I've done accupuncture, myofascial stuff, osteopathic stuff, none of it has helped. It is almost hard for me to envison that I'll ever be well again. Could a disc cause this much havoc on my whole body? Could they be missing something on the MRI that is 9 months old at this point? I just don't know where to turn. They just send me on my way, but I am SO SICK. Sorry to unload - today is a bad one. Thanks. Mona

     
    Old 12-22-2006, 09:37 AM   #13
    monarog
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    Re: Could these symptoms be Myelopathy?

    Only brain MRI was the MS type, with contrast, came out clean.

     
    Old 12-22-2006, 09:44 AM   #14
    PearlDoves
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    Re: Could these symptoms be Myelopathy?

    Well an MRA will show all the vertebral arteries as well as carotids and other things that might be going on with the brain, this is why I say get an MRA of head and the neck.

    What about a Discogram??? have they done that?

    I don't know what to say, I guess what I would do is get your reports, start calling more neurosurgeons, even if it means in another state, you could perhaps fax them your reports and talk to them on the phone and they might be able to give you more insight or at the least give you a more honest opinon, maybe these surgeons are afraid that the surgery is too risky? If you want the name of a doc or two here in WI let me know.

     
    Old 12-22-2006, 09:55 AM   #15
    monarog
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    Re: Could these symptoms be Myelopathy?

    I hesitate going to the ER, as I've been 3x over the past 10 months. They tell me they only admit "life threatening" problems. They prescribe some sort of anti-anxiety RX and send me away. To look at me, I look fairly "normal." Really other than the hyperreflexia, higher than average BP....not alot of red flags for them. But I feel TERRIBLE. My neck kills me, my nerves are just so super-charged, twitching, buzzing etc. I appreciate all the ideas. The only look at my neck has been MRI (which everything I read says it's the gold standard). Sometimes I feel that is what is nailing me - they glance at the MRI, say neck is improving...and away they send me. My gut tells me there is so much more going on there. I understand I could have an entirely different problem in addition to the neck...it just seems so ironic that all of this came down 4-5 months after an undisputed large herniation. Who knows, I just want help and to get figured out. Sometimes it all feels like a bad dream, 10 months with no help or diagnosis of this neuro stuff that is just unrelenting, everyday. Thanks again for the ideas. Mona

     
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