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Undiagnosed Nerve Pain in the Legs

Hi everyone,

I was just wondering if anyone else has had or is experiencing a similar situation of undiagnosed nerve pain in both legs?

I experience burning in my hamstrings which radiates down the back of my thighs, tingling in my feet, sharp stabbing pains in my hips and hamstrings, muscle spasms throughout the entire leg and feet, muscle twitching -especially in my toes and feet, extreme leg muscle tightness- that lasts for about four days with a flare up, and muscle cramping in my feet, calves, and thighs. I remember going on the exercise bike one day and feeling a cool sensation in my thigh like a bunch of icy veins were squeezing the muscle in when I tried to pedal. It felt bizzare and I decided to stop and contact a doctor.

My symptoms worsen with "too much" activity, though my definition of "too much" is hardly any at all. I may have a good period for a while where I very slowly build up my muscles and am able to do yoga and walk around, but then, all of a sudden, I'll do a bit more than usual, and BAM. Back to not being able to walk around again without extreme leg muscle tightness and pain for about four days . Then I have to very slowly add in walking, and often have repeated leg flare ups where I am unable to return to my previous state and can hardly move around. It's almost like something is restricting my movement. I have been experiencing these symptoms for five years. It began with extreme leg antzyness-almost to the point of pain- in high school, which, at first could be relieved with exercise, but is now worsened with it.

Currently, I have had a MRI on my spine, nerve conduction testing, vascular testing, all of which have not shown any issues. I am just waiting for an MRI on my pelvis/ hamstrings. I never thought I'd ever wish to find something wrong, but in this case, I hope to so that I can try to treat the problem and attempt to get on with my life.

Sound familiar to anyone? Please feel free to give me a shout!


  • 2v8822v88 Posts: 6
    edited 07/25/2012 - 11:15 AM
    Hi biobabe131
    my message with the don't give up and let the medical experts fob you off. I am five days in from the revision surgery which I almost had to beg for because my MRIs space ET scans all other tests and procedures failed. I was told that surgery would actually make my condition worse and was strongly advised not to pursue this was not just by one orthopaedic surgeon but indeed the opinion of an entire orthopaedic team at a teaching hospital. The only thing they could find a small cyst which was drained prior to surgery (unsuccessfully).
    Consulting was me after surgery the surgeon just shook his head and pulled up his shoulders and said "that's MRI scans for you ". He went on to tell me that together with significant scarring of the previous operation they found that my L5 nerve root was impinged by a disc herniation which did not show up on a MRI.
    My symptoms, which for the most part was excruciating pain , lower back, buttocks, front and back of my thigh, calves and foot. I could not stand or walk more than a couple of minutes and the only comfortable position was lying down which meant that I was bedbound for the last six months. Today five days after the operation I've walked a mile with no pain. I have muscle pain and stiffness but that's expected for somebody who has been lying down for the last six months.
    So once again don't give up keep on pressing there was something and there must be a diagnosis.

    "A towel, it says, is about the most massively useful thing an interstellar hitch hiker can have. "
    The Hitchhiker's Guide to the Galaxy
  • I also have undiagnosed pain, nerve and mechanical. My MRI 4 years ago showed an annular tear and DDD (I'm 31). The Dr and the physiotherapist said that the findings do not account for my pain. My condition is thru Worker's Comp, which are awful to deal with. I am in Canada, but since this is a WCB issue public health care can't do much. I have read that sometimes positional MRI's can sometimes show more than a traditional one, I am saving up for one now.

    While I am not much help, I wanted you to know that you are not the only one that has pain and the Dr can't tell you why.
  • Thanks for your post 2v88!

    I really appreciate it! I am happy that you have been able to gain some of your strength back. That must feel amazing!

    Currently, I have discovered active release therapy (ART) done by the chiropractor, which involves deep tissue massage while stretching and it has been helping a lot! I am not sure what it is helping with, but I have gained a bit more mobility and am trying to gradually add in movement again. Still don't know what's wrong though.

    How do you find the building up process? I have a hard time knowing when to add!

  • Sorry to hear you are undiagnosed as well, Snookie. Thank-you for your post! Wishing the best of luck in your diagnosis!
  • My operations are as follows - ACDF C2/3/4 in September 2010, Posterior Cervical C5/6/7 in December 2011, Plating to facet joints C5/6/7 in December 2011 also PLIF + rebuild in December 2008 plus I have also had both knees replaced in 2000 and 2006. Since 2010 I have had severe leg pains especially in left leg. I have found that getting a Lumbar Caudal Epidural Injection helps relieve the pain for a couple of months. Another thing that helps is taking Amitryptiline tablets preferably before bedtime. They seem to block most of the nerve pains. Hope this has been of some help to you. By the way I live in the UK. Due another injection in or around 22/8/12.
  • I had terrible sciatica and nerve pain in my feet. I had a lumbar fusion which really helped. Then I started to get nerve pain in my legs and feet again. After a full spine MRI scan, it is suspected that the cord compression I have in my neck is responsible for this. It has not been confirmed, and I am waiting for the decision from a neurologist that I was sent to to rule out MS. That was 2 months ago. These neurologists really take their time!

    Wonderboytwice - What dosage of Amitriptyline are you on? I am taking Nortriptyline (same family) and I am also getting a lot of relief from it (20mg). Strangely I get more relief in my hands and arms than in my legs and feet. I take mine about 12 hours before I want to get up in the morning and don't really notice a problem with being tired in the morning. I am also sleeping much better than before taking them.
  • Great site. A lot of useful information here.
  • Hi, I'm new to the board. I'm experiencing a similar problem. I had a laminectomy/distectomy on my L4/L5 in high school in 2000, was doing swell and really worked to keep myself in the best shape possible, and do everything right to avoid further problems. My neurosurgeon at the time assured me it would NOT be my last surgery, and I was determined to prove him wrong. Turns out, he was right. Summer of 2010 my back started acting up again. I was still determined to avoid surgery, did 9 months of therapy, TENS units, braces, acupuncture, everything under the sun I tried but ended up have to have a fusion at that level. My surgeon was optimistic that my problems would resolve.

    In surgery he discovered in addition to my disc problems a synovial syst that was not on my MRIs because it was veiled by scar tissue. So that was a happy surprise to be removed. It was a rough recovery, but at the beginning of March I started to feel better. I had a month of feeling pretty good and was thrilled to be back to normalish, being 28 I was so tired of missing out on all the fun my friends were having because of my debilitating pain. Then in April I started having back pain again and acute nerve pain in my right "rump roast" as I call it, into my calf, and into my foot. As well as numbness in all of the above. My MRI doesn't really reveal anything that would cause such a problem. Some minor issues that appear non-compressive.

    I'm doing injections now and they say after 3 failed injections I'll be a candidate for a nerv-stimulator which I really do not want to have but don't know what else to do.

    It is SO TERRIBLE having such burning/searing pain down my right leg. The numbness especially bothers me because it limits my ability to drive. Once again have tried everything, land therapy, water therapy, oral steroids, maximum level dosage of neurotin, tens unit on basically constantly, walking, etc. etc. and am still in this position.

    I guess I just want to give a virtual hug to everyone here. I named myself the pretender here because I feel I'm so often in situations pretending I'm not in pain when really I'm screaming inside and sometimes have to escape to the bathroom at work and cry and such. Life like this is awful. People who aren't living with chronic pain don't understand the toll it takes on every aspect of your life. It's a life of chronic HORRIBLE pain and shuffling around from Dr. to Dr. hoping for some sort of answer and a solution but unfortunately there doesn't seem to be one.

    Glad to have found this site, it's nice to not feel so alone in all this like I do. Pleasure to meet you all :)

  • I think there are many of us here who totally understand the 'pretending' that we are fine.
    Being in pain and limited in how we can move can really get us down, and sometimes it seems a good idea to pretend that we are feeling fine - just wishful thinking.

    This is a great place where you can come and be real about how you are feeling. We will understand, sympathise and give you support; some times you will support us through our difficult days.

    I really hope that someone will come up with a plan to help you deal with your chronic pain.
  • WonderboytwiceWWonderboytwice Posts: 149
    edited 08/04/2012 - 5:22 AM
    Hi Jellyhall. The amitryptline dosage I am on is 25mg and I take 2 immediately before going to bed. The only trouble with them is they leave you in the morning with a very dry mouth. Exercise I find is also very good on a daily basis but please do not overdo it. I am also very lucky to have had such a renowned Spinal Surgeon carry out all my spine operations. Believing that you are going to get well is also a great help in alleviating pain. Why do you see a Neurologist jellyhall and not a Spinal Surgeon? I attend a world renowned hospital on Brockley Hill. Stanmore, Middlesex which is truly wonderful. I believe L5 gives one pain in the left buttock/leg/foot and L4 in the right buttock/leg/foot. Hope this has helped you both.

  • I walk about 2 miles a day, which I believe really helps me. My physio has told me that it is the most helpful things I can do and if I do nothing else, to walk, walk, walk. I did this walking before my lumbar fusion and was told that was part of why I recovered so well.

    I was going to be referred to a neurosurgeon at Stanmore for a second opinion, but then my GP spoke to others and decided that as my records wouldn't be available to view there (different hospital trust) that they would refer me to a different surgeon at the same hospital. I have been sent to a neurologist because a neurosurgeon registrar, that consultant and my pain consultant all felt that some of my symptoms may not be from my neck. They wanted to rule out MS. I have now had a letter from the neurologist who has said that his opinion is that all my symptoms (except jaw and temple pain) could be from the cord compression in my neck. He says that I will need to have surgery at some point. Now I have to decide what to do next. My husband is in the very early days of recovering from surgery, so I will wait until he is completely better.

    Then it looks like it is my turn!!!

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