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Thread: New to site- Feeling so lost right now

  1. #11
    Forum Member Ellie's Avatar
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    Hi Spud and welcome.

    Sorry to hear of your mum's diagnosis. I understand your feelings.

    It's probably best if your mother attends an ALS Specialist to have her diagnosis confirmed if her "small town Neurologist" isn't confident on diagnosing ALS/MND, or indeed you want a 2nd opinion.

    Going forward, if it's possible, attending an ALS Clinic is recommended for the best and most appropriate care - they have the expertise for both medical and equipment needs.

    To find your mum's nearest centre, use the finder on this link http://www.alsa.org/community/?gclid...0aAqcUEALw_wcB

    You'll also find lots of good info on the site.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
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    Good morning from Houston

    Thank you for all for your kind words and information.

    Test are in. Mom and I have an appointment for Tuesday to find out our journey. She has allowed me to take her and I'm already making a list of questions to ask if the case arises.

    I do have one thing I have noticed. Mom is using words when she talks to me that she would not normally use. She is very "proper". She doesn't curse in front of me or use slang type terminology. Is this something I should mention to Neurologist?

    Spud

  3. #13
    Forum Member Ellie's Avatar
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    Yes Spud, do mention the change of vocabulary to the Neuro - it might be nothing or something.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
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    Well, the test are in.

    Doctor said all labs were negative. He said ALS or MMN. He said the words terminal.

    I am confused about one thing, he said lab work for MMN was negative. He still suggest spinal tap to make sure. Why spinal tap if lab for it was negative?

    Wants us also to get second opinion from specialist which we will.

    Parents in shock. Mom really held out hope for Lyme disease. Mom felt he was sending her home to die. Im not about that. He didnt suggest PT, OT, or anything. Maybe he expecting specialist to handle it.

    We are still at a crossroad. One roads leads to recovery of a sort MMN treatable and the other to the unknown.

    Hanging in there. Goodnight from Houston. Thanks for listening.

  5. #15
    Forum Member nunhead_man's Avatar
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    Hi Spud

    Quote Originally Posted by Spud View Post
    I am confused about one thing, he said lab work for MMN was negative. He still suggest spinal tap to make sure. Why spinal tap if lab for it was negative?
    I am sure somebody with more knowledgeable than me will be along in a minute, but I also had a spinal tap in order to confirm diagnosis.

    This was on the one hand to exclude multiple sclerosis as I understand it, but also at my request to check for infection in the spinal column as at the time I was wondering if what I had any relation to having had Bell's Palsy before.

    For those that do not know Bell's Palsy is caused by the infection of the cranial nerve, where it passes through the middle ear and as a result one side of one's face is frozen, running from eyeblink the does not work to one side of jaw not working - frighteningly similar to a stroke. In my case it seems to have been caused by viruses resulting from an attack of cold sores and was over in a fortnight. But as that freezing of nerves was what seemed to be happening to me in my case I was interested to know whether there were in fact any similar viruses in my spinal fluid that was causing the effect.

    The answer was no, of course

    My diagnosis took quite some time once I was in the hand of a competent neurologist because he wanted to see what was developing - and it was the shape of my left hand with the loss of its pinch grip, which was the definitive point in my case, along with the exclusion of everything else it could be.
    Last edited by nunhead_man; 20th April 2019 at 08:57.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  6. #16
    Forum Member Ellie's Avatar
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    Hi Spud,

    Not everyone with MMN has the antibodies the blood tests are designed to detect so a negative blood test does not rule out MMN, hence the lumbar puncture / spinal tap test.

    I am glad your mother is getting a 2nd opinion - MMN should have different NCS & EMG results than ALS.

    Best to you both.

    Love Ellie.
    Last edited by Ellie; 18th April 2019 at 16:15.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

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