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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.

    #2
    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.

    Comment


      #3
      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.

      Comment


        #4
        I wish you well with your neurologist appointment. Hopefully that will help establish what is causing your problems

        Richard
        Richard

        Comment


          #5
          Let us know the result, we all wish for a diagnosis that does not shorten your life.
          Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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