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  • gator21

    In January 2013 I began having deep burning nerve pain on the top and inside of my thighs. Tight pants or cold wind would make the burning worse and especially at night or in the mornings. I have also had muscle twitching all over but mainly in my legs, and arms. Brain fog will come and go.

    In 2013 I had clean MRIs, clean EMGs, but 3 positive ANA tests that were as high as 1:640. Although the ANA test was positive the tests for specific Autoimmune diseases have been negative. My vitamin D level was low but is back to normal and symptoms still persist.

    I’ve lived with the nerve pain predominantly in my legs for the past 7 years, some days worse than others.

    Fast forward to 2020, it seems like the nerve pain in my legs has gotten worse or I’m thinking about it more. Also have faint nerve pain on the back of my right shoulder. I have more trouble concentrating, feels like I’m seeing but not processing fast enough/concentrating and some cases of sensory overload. Also having a decent bit of fatigue. Haven’t been able to get any answers.

    In 2020 I had MRI of my brain and C-spine on a 1.5T which was clear last week. EMG/NCV was also clear. Still worried that I could have MS as my thighs continue to burn and feel like my visual processing is slow. Hopeful that 2 clean MRIs, 1 in 2013 and 1 in 2020 make it unlikely..

    Also, my neuro said my knee reflexes were “brisk” but not pathological/abnormal.

    Anyone else have these symptoms or feel that they are indicative of MS? Haven’t been able to get any answers and frustrated after 7 years. Is this “only a matter of time” before I get diagnosed or do you think my description is not indicative of MS. Scared and frustrated and concerned that lesions may not be getting picked up on the MRIs?  

  • MS_Navigators
    Hi there,

    Because there are no laboratory tests or specific set of symptoms that definitively point to a diagnosis of MS, confirming the diagnosis can be complex. For some people, it can take a long time to get definitive answers. During the testing process, the health care provider will rule out other conditions that could be causing the symptoms, because the symptoms that may be commonly seen with MS can look just like symptoms of other medical conditions. This section of our website about Diagnosing MS may be helpful to review, including the additional links on the left side under Symptoms & Diagnosis:
    Diagnosing MS 

    If you aren't already, you may wish to see a neurologist who specializes in or has experience with MS.  It typically takes a neurologist to diagnose MS, but not all neurologists have extensive experience in MS.
    The search function in our “Find Doctors and Resources” tool on the following page can help find referrals near your area:
    Find Doctors and Resources : National MS Society

    I hope that you can get some answers very soon.

  • gator21
    Thanks for the information.  I'm aware of the complex nature of the diagnosis, just trying to see if other people here are similar to me or if I'm totally off base.
  • flipflopgirl
    I too have the horrific nerve pain on the top of my thighs. It came on suddenly about 12 -16 months ago. Always at night. I first thought it was a Magnesium or Potassium deficiency. But the pain continued. I've also had mysterious  chest pain for about 4 years that my dr. has not been able to explain. I think now that it's a MS hug. 
  • mountainadventurer
    I am with you here.  I suffer from deep leg pain from the tops of my thighs down to my shins that sometimes never ends.  It keeps me awake at night once in a while.  It comes and goes, and ironically enough, my migraine medication Nortriptyline stops the activity most of the time.  I also have horrible fatigue, tremors in my right arm, and every so often struggle with speech.  I have had several clean MRIs and a clean EMG.  My highest ANA was 1:160 (borderline) with negative IgG and fine speckled pattern.  I have seen 5 neurologists so far who have basically all told me there is nothing wrong with me and it's just depression.  I was even put on antidepressants and sure, it made me feel better about life, but none of the symptoms went away. 
    I have heard that "pinhole" lesions are not detectable on MRI, even 3T MRI.  I am so sorry that you are going through this too...and for so much longer than me.  The desperation for relief hurts the most.  Feel free to reach out any time.