• Posted by Amanda on March 24, 2022 at 8:29 am

    Have you ever googled “What kind of doctor do you see if you think you have ALS?”  We all know how this process goes — long. The results were something like this, “Your first step is a full exam by a neurologist. This is a doctor who specializes in disorders of the nervous system, including your brain and spinal cord. This exam will include lots of questions about your symptoms, health history, and family. Bring notes with you so it will be easier to answer their questions.”

    When did you first seek out medical attention and for what symptom? What kind of doctor did you start with?

    Did you use the internet to research symptoms? What was that experience like?


    len-jax replied 1 year, 6 months ago 4 Members · 3 Replies
  • 3 Replies
  • lawcarol

    March 24, 2022 at 2:29 pm

    I had no idea what I had but an orthopedic PT I saw thought it was neurological. I made up Parkinson’s symptoms and got PCP to refer me to neuro. She hammered my knee again and said “how did I miss that?”  I picked neuro my friend’s son, an MD found for her after he fired 2 neuros. This neuro suspected PLS; she was dead right. Then I went to Mayo for 2nd opinion that guy didn’t mention lateral sclerosis; said I had spastic paraparesis (duh).  Since then 3 ALS specialists at 2 major universities  have confirmed ALS.

  • bill1949

    March 24, 2022 at 5:17 pm

    With me a problem with my thumb was what started me at an orthopedist. Besides arthritis he suspected nerve problem. He referred me to neurosurgeon. They performed nerve studies but could cone up with no diagnosis. I then went to local neurologist whose method was to just wait and see. No diagnosis. I insisted on referral to a university MND specialist. I was diagnosed with ALS.

  • len-jax

    March 24, 2022 at 5:23 pm

    I started occasionally catching my left toe stumbling as I walked, having difficulty stepping sideways – my upper body would move, but my legs would be a split second behind. Walking downhill was difficult.  Unrelated, but at the same time, I was having some memory issues, forgetting my wallet, leaving 20 pounds of meat out of the freezer, and forgetting people’s names.

    I got a referral to a neurologist, and after many hours of tests, his diagnosis was mild cognitive impairment and clumsy leg syndrome.  He was correct with the cognitive impairment but just made up the clumsy leg stuff. Why can’t some doctors say, “I don’t know?”

    I did not use the internet at that time to search for answers.  I waited for more symptoms to develop for a diagnosis.

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