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  • Help needed from new member

    Hi everyone, I posted this on a few other forums so please excuse me if you have read this before.
    I have an undiagnosed neuro problem.
    Basically my left leg is paralysed from the hip down, no feeling or movement. My right has limited feeling but good movement. Very little muscle atrophy in both legs. I am due to see a urologist in January about urine retention. I use a full length KAFO on my left leg and use underarm crutches or a wheelchair for long disatances.
    I have had 2 MRI scans, lumbar puncture, EMG tests, evoked potentials, blood tests and urine tests. All were negative. I take Baclofen for spasms in my left leg, Temgesic for nerve pain radiating from the centre of my spine down both legs, burning, buzzing and cold and hot sensations on both legs.
    This is the 3rd year now and I am due to have another MRI in January, but I am not hopefull that anything will show up.
    It is getting me down as I am still in the dark as to what my problem is....I did have a motorcycle accident around 7 years ago and hurt my back but did not need to go to hospital and have had no other health problems in my life.
    At the moment this problem really is taking over my life, my work is suffering and I am not sure how long I can keep working for as I get tired really easy and suffer bad pain in my back and legs.
    Any thoughts or people in the same situation, please get in touch or reply here.
    Many thanks
    Take care
    Stu
    ps....I am 38 and live in England.And the spell check does'nt work for me !!!!!!

  • #2
    Originally posted by speo
    Hi everyone, I posted this on a few other forums so please excuse me if you have read this before.
    I have an undiagnosed neuro problem.
    Basically my left leg is paralysed from the hip down, no feeling or movement. My right has limited feeling but good movement. Very little muscle atrophy in both legs. I am due to see a urologist in January about urine retention. I use a full length KAFO on my left leg and use underarm crutches or a wheelchair for long disatances.
    I have had 2 MRI scans, lumbar puncture, EMG tests, evoked potentials, blood tests and urine tests. All were negative. I take Baclofen for spasms in my left leg, Temgesic for nerve pain radiating from the centre of my spine down both legs, burning, buzzing and cold and hot sensations on both legs.
    This is the 3rd year now and I am due to have another MRI in January, but I am not hopefull that anything will show up.
    It is getting me down as I am still in the dark as to what my problem is....I did have a motorcycle accident around 7 years ago and hurt my back but did not need to go to hospital and have had no other health problems in my life.
    At the moment this problem really is taking over my life, my work is suffering and I am not sure how long I can keep working for as I get tired really easy and suffer bad pain in my back and legs.
    Any thoughts or people in the same situation, please get in touch or reply here.
    Many thanks
    Take care
    Stu
    ps....I am 38 and live in England.And the spell check does'nt work for me !!!!!!
    A few questions. When you say limited feelings on your right leg, do you mean that you can feel touch but not pinprick, pain, or temperature? When you lost function, did you have a episode of fever? Over how long did you lose the function?

    Wise.

    Comment


    • #3
      Hello Dr Wise, thanks for replying.
      I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
      I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
      Thanks again
      Stu

      Comment


      • #4
        Originally posted by speo
        Hello Dr Wise, thanks for replying.
        I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
        I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
        Thanks again
        Stu
        Did you have any vaccines within a few weeks before this all started?

        Or have any of the MRIs included your vascular system specifially arteries in the abdoman? Normally when you can feel and even move some but cannot distinquish pain from pressure or cold from hot you have a problem with the anterior (front) part of your spinal cord. I'm thinking of a bleed from an unfound anuryseum (sp?) after your motorcycle accident that deprived part of your cord of oxygen. Wise? Good guess?

        And spell check doesn't work for me either.
        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.

        Comment


        • #5
          Hi Sue, I had no vaccines prior to all this starting. The first MRI was only lower back and legs (I think) and when the spine consultant saw nothing wrong he refered me to a neuro consultant who then ordered a full body MRI. When this showed nothing I then had a lumbar puncture, EMG, evoked potentials and blood tests. All were negative. The only thing I can think of was when I had the lumbar it took the doctor a very long time to find the right spot to stick the needle in and he asked if I had any spine problems. Not sure if this has any bearing on anything. I also had a few xrays of my spine and this showed up nothing as well.
          I am due for another MRI in January but I am really afraid this will show nothing again and I will be discharged from my consultant again and this will go on forever !!!!!!
          Thanks for all your help once again
          Stu

          Comment


          • #6
            Originally posted by speo
            Hello Dr Wise, thanks for replying.
            I have limited feeling in my right leg, I can feel pressure but not pin pricks and tempreture is a problem also.Not sure how to describe it really but it is no where near as bad as the left leg.
            I never had any sort of fever. The problem started on my left leg which had a numbing sensation below the knee, this spread to the thigh over around 3 weeks, then I seemed to lose movement also over another 2 weeks....my right leg in the meantime seemed ok but went the same over a period of around 3 weeks also. I have now been like this for around 3 years now and it does not seem to be progressing any more.
            Thanks again
            Stu
            Stu, your description is consistent with what is called a Brown-Sequard syndrome (Source) which occurs when half of the spinal cord is damaged. This leads to a loss of motor function and pain/pinprick sensation in the lower limb on the side of the injury but preserved pain/thermal sensation and motor function in the lower limb on the other side. Because the locomotor pattern generator does not require bilateral innervation, most people with Brown-Secquard syndromes will recover walking. On the other hand, sensory recovery is often limited and people continue to find that they cannot detect the position of the leg on the affected side and cannot detect pain and thermal sensations on the other side.

            /forum/showthread.php?t=16270
            /forum/showthread.php?t=15098
            /forum/archive/index.php/t-3334.html

            Wise.
            Last edited by Wise Young; 11-24-2006, 01:54 PM.

            Comment


            • #7
              Once again a big thank you for your help Dr Wise.
              The condition you mention does seem to fit the bill as to my condition. One thing I am still unsure of is why nothing has shown up on the MRI scans and also the other tests I have had. I thought an MRI was pretty conclusive in showing up damage to the spinal cord ????
              I would appreciate your help in explaining this as I would like to go to my consultant with your finding and maybe get him to investigate further but I am afraid he will dimiss me as making this up to "fit the bill" so to speak.
              Thanks for at least giving me some hope in finding out what is going on with my body.
              Stu

              Comment


              • #8
                Thanks Wise. And this is why I am not a doctor.
                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.

                Comment


                • #9
                  Hi again, I see my consultant on Wednesday and I am going to mention Brown Sequard to him. I would still like someone (anyone !!!) to try and explain why all my tests were negative and especially the MRI scans. The more I think about it the more the symptons are exactly what I am suffering but surely some sort of scaring or marks on my spinal cord would show up on any scans ???????
                  Any help before Wednesday would be great.,
                  Thanks again
                  Stu

                  Comment


                  • #10
                    Speo-

                    I was diagnosed with Primary Lateral Sclerosis (PLS) after 5 years with normal tests. I was told it was all in my head (even though I went from walking fine to needing AFOs...to crutches, to a chair). Some of those tests only look at peripheral (sp?) nerves and damage to those versus central nerves (which was the problem with me). Now...I do have some "abnormailties" on my tests...but nothing that would have caused someone to stop and think about it. My diagnosis was done by the process of exclusion of other problems. My advice to you is to make sure you do not let doctors tell you you are imagining things (because you are the only one who is experiencing the symptoms) and to stay strong in finding your diagnosis.
                    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

                    Comment


                    • #11
                      Don't give up trying to find a Dr that can help. Tell them that you are tired of this going on and it is their specialty so find out the cause. If they can't find out the problem to send you to someone who can. I hate it when I have to take a stand with them but obviously you have something going on. I have had Dr's tell me that well I don't know what it is but at least I know what it isn't. Don't take it. They get paid for telling you nothing. Take it up on yourself. I would look up the threads Dr Wise gave you and print out what sounds good. Of course Dr Wise is giving his opinion (which he knows what he is talking about) and is not giving you a diagnoses but at least the Dr's can have something to go by.
                      Mary
                      I want to Rock you Gypsy soul and together we will flow into the Mystic.
                      Van Morrison

                      Comment


                      • #12
                        Question to the medical people

                        Hi again, I am convinced through the help of the good people here that the diagnoses of Brown Sequad is correct but I am still in need of answers by anyone who cares to inject something to this thread.
                        My main question is why after 2 MRI scans and the 3rd will be on the 21st of this month has nothing showed up on the scans.
                        I am repeating myself slightly but I did have a motorcycle accident around 6 years ago and hurt my back, so could this have caused some sort of lesion that has heeled and only now I am feeling the affects ? But why nothing on any of the tests I have had and I thought MRIs were the best thing since sliced bread.
                        I am really getting paranoid now and I am thinking this is all in my head !!!!!!!
                        If my next MRI is negative what do I do ??????
                        Thanks again
                        Stu

                        Comment


                        • #13
                          An MRI is only one tool for making a diagnosis of a neurologic disease. Your neurologist should of course also be doing an extensive exam, and considering other tests such as an SSEP. You should discuss this with him. Non-traumtic causes of spinal cord damage (for example, viral disease) may not show up on an MRI at all.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #14
                            Hi, I have already had :
                            2 MRI scans
                            Evoked potential test
                            EMG test of both legs
                            Lumbar puncture (very painful and ill for over a month)
                            Dose of steroids
                            I take Baclofen, Temgesic and Diclofenic.
                            So all the tests were negative with nothing showing up at all.
                            What else is there and I am still not sure that if I have a lesion to my spine then it should have shown up on the scans.
                            Thanks
                            Stu

                            Comment


                            • #15
                              Speo, did any of your MRIs include contrast dyes? My lesion from the spinal stroke I had is very tiny. Looks like a tiny tiny needle. Many also change with time so they are harder to read. Your doctor may also want to take about 15 tubes of blood this time to test for everything in this world and Mars..
                              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.

                              Comment

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