Confused about testing for MS?

I am new here and have not been diagnosed with MS as of yet. I have been having a lot of symptoms over the past month or two and my rheumatologist became very concerned. She did blood work and my inflammation markers came back very high. She sent me to neurology, and they did the VER and SSER testing. During the SSER test they got absolutely no response on my lower limbs. I felt nothing. She turned the current as high as she could possibly go and still there was no reaction and I felt nothing.

My symptoms have been getting worse. I have been falling down a lot as I am off balance, I get light headed, dizzy sometimes it feels like the room is spinning. At times I can’t feel the floor under my feet. I will feel like my body is being stung by bees and it will be all over my body (hands, feet, legs, arms, torso). When I turn my head to the side, I feel dizzy or lightheaded. My muscles in my arms and legs sometimes hurt so bad I can’t stand it. I feel like someone beat me up. I was recently told I have small fiber neuropathy.

A few days ago my neurologist’s nurse called and told me that my tests came back normal and all of my symptoms are from the neuropathy. I checked the patient portal for the clinic and saw that the test result made no mention of the test being done to my lower body and there was not mention of the fact that my legs/feet felt nothing. When I said this to the nurse, she didn’t know what to say. She told me she would mention this to my doctor, and they would get back to me.

Everyday I feel worse. I am so sick of falling. I am almost 56 years old. At this age, falling down is not fun. Am I overreacting? Should I just let this go and assume it is just this new diagnosis of small fiber neuropathy or fight for what I feel is wrong?


Community Answers
  • Mare
    3 months ago

    Hi Debbielou,

    I am so sorry, my dear, that you are having such difficulties. My primary care doctor sent me to a neurologist. He worked with Albany Medical Center, which is a teaching hospital — those are the best (if you live near a teaching hospital). They are up on the latest techniques.

    They did a whole battery of tests: Blood work for Lyme Disease tested for Chronic Fatigue & Fibromyalgia; did an MRI, Visual Evoked Potentials. After all that and about two months later my neurologist told me that I had MS. He said he saw enough on the MRI and the rest of the tests he ran not to not put me through a Spinal Tap.

    If you are NOT SATISFIED with this doctor, FIND ANOTHER ONE and get a second opinion. You have to feel confident with ANY doctor as you will have rapport with that person for a long time and you should feel confident asking any questions and getting answers. Hang in there!!

    P.S. You shouldn’t also be getting test results so important from a nurse — it should be the doctor IN PERSON.

  • Devin Garlit moderator
    3 months ago

    Hi debbielou, while evoked potentials are certainly part of diagnosing MS, I’d say that an MRI is normally the first and most common test (along with a spinal tap). If your neuro didn’t have an MRI done, I would question them and perhaps consider another doctor. It’s unfortunate, but not all doctors are as well versed as they should be in diseases like MS, particularly with the most modern testing and treatment protocols.

  • DonnaFA moderator
    3 months ago

    Hi Debbielou, I thought I would share this article, Diagnosing MS Isn’t Easy — Here’s Why, by our wonderful Kim. Hopefully, other members will chime in with their personal experiences.

    If you are not comfortable with the information you have been presented, you owe it to yourself and your peace of mind to get a second opinion.

    Thanks for being part of the community. -Warmly, Donna (MultipleSclerosis.net team)

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