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Awaiting my neurologist referral, undiagnosed

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    Awaiting my neurologist referral, undiagnosed

    This is a list of past and current issues I've experienced. I prepared the list for my new GP. Recent labwork ruled out any deficiencies as the cause. So I'm being referred for balance therapy and to a neurologist for testing. My progression had been slow for a few years, but in just the last few weeks, it has become a very rapid decline. I'm now considering stopping eating because of swallowing trouble. And, I am getting very weak, especially my upper arms and upper chest area.

    Thoughts on this possibly being a form of MND?
    • Neurological/central nervous system episode in 2014/2015 for approx 6-8 months (3 abnormal lumbar punctures, mild slowing on left side of brain on EEG, some abnormal blood clotting results)
    • Depression, anxiety, adult ADHD, and agoraphobia began soon after
    • Possible Covid, then pneumonia 2020
    • Chronic shortness of breath since then (abnormal breathing test and reduced lung capacity on X-ray, but no diagnosis)
    • Bad fall (bedridden for a month), then balance problems (very unsteady and terrible fear of falling). I'm extremely wobbly on my feet and also can't stand up very long
    • Slightly slurred/draggy speech
    • Trouble swallowing at times
    • Muscle spasms and cramps all over (even in strange places)
    • Neuropathy in both feet
    • Hands & feet frequently go to sleep
    • Becoming uneasy driving, feel unsteady
    • Sensory overload to noise (have meltdowns)
    • Shaky at times
    • Multiple times daily violent gagging/retching and frequent clearing throat
    • Severe dry eyes and dry mouth (past salivary stone), dentist & eye doctor suspected Sjogren's, but tested negative
    • A couple of recent sudden weak spells with strange head feeling (not dizzy or headache) *This has become more frequent
    • Night sweats & chills, suspected menopause but recent DNA test showed post menopausal
    • [fatty liver, non-alcoholic cirrhosis, portal hypertension, stomach & esophagus varices, gastroparesis, osteoarthritis all over w/bone spurs and nerve impingement, chronic intertrigo/skin yeast infections, previous alcohol addiction lasted for 3-4 years (quit August 2020) At first, I thought alcohol was the cause but it is getting worse since quitting]
    • Currently eat tiny meals 3-4 times a day, low carb diet most of the time. Weight has both gone up & down by more than 50-60 pounds in the last 1-2 years. Currently losing again.
    • EKG's, echocardiogram, and nuclear stress test were all good. I have been told multiple times that I have a heart murmur.
    • Epstein Barr Virus in my early 20's. Also had one doctor several years ago tell me that I had Lyme Disease, but I don't recall actually being tested.
    Also recently began having goosebumps (aka goose pimples) at times in both arms and upper body.

    Last edited by onetyger; 12 July 2021, 17:43.

    Good luck for your neurological appointment. Sorry that I cannot comment on your symptoms list. Take care, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.


      Sorry you're experiencing these symptoms.

      Motor Neurone Disease causes motor neurons to die and this means the signals from the brain to tell the muscle to move, cannot be transmitted - it's all about muscles failing to function, that's it in a nutshell.

      People here cannot tell you what might be wrong with you unfortunately. Best wishes for your upcoming Neurologist's appointment and I hope you get answers.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        I wish you well with your neurologist appointment. Hopefully that will help establish what is causing your problems



          Let us know the result, we all wish for a diagnosis that does not shorten your life.
          Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.