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Thread: So here's my story.. and how I may have triggered MND.

  1. #1
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    So here's my story.. and how I may have triggered MND.

    Hey everyone,

    My names Michael, i'm 35 years old, single and from Melbourne, Australia

    So here's the story of how i believe i may have triggered MND.

    Back in early December last year I had an allergic reaction to medication that caused severe sleep disruptions. It only started happening after about a week and a half on the medication and a few days after i increased the dose. I saw my GP about it who was adamant it was anxiety and stress related which i did experience quite a bit of during that week with work and things so i just believed him. I simply didn't suspect the medication at all after being already on it.

    It wasn't until after nearly 4 weeks that i realized it had to be the medication when i suddenly started waking up every hour (previously it was every 2-4 hours). I stopped the medication straight away but then experienced severe withdrawals with tremors and extreme anxiety. I was told by my housemate who had taken this medication before that it can take 10-14 days for the withdrawals to stop. I started panicking. Not only could I not stay asleep, I now couldn't fall asleep.

    I saw my GP straight away who advised i needed to taper down slowly. I explained how the medication was causing severe sleep disturbances but he just gave me more of the medication and worked out a plan for me to taper down quickly over several weeks which i reluctantly did.

    I finally stopped the medication on January 21st but the sleep disruptions still continued through to February where i was on about 6-8 hours of broken sleep per week. My heart rate at this time was also increasing to over 100 beats per minute at rest, blood pressure was right down below 100 and heavy heart palpitations were happening regularly.

    It was on January 15th however that I woke up after about 2 hours and panicked pretty bad after feeling my palpitations start up abruptly that it happened...

    Unable to move or think, I felt liquid pumping down the back of my neck at the base of the skull down about 10cm. It pumped about 6-7 times, then stopped. it wasn't flowing down, it was being pumped out. This only happened the one time.
    I didn't know what to make of it but I felt ok afterwards so i just decided to go for my routine daily walk. Upon returning home i felt a crazy amount of muscle twitching in both my calves under the skin which continued for about 5-6 minutes. This didn't happen yesterday but kept happening everyday on wards. Again i felt fine afterward so just left it.

    After a couple of weeks my sleep was recovering and i was getting 6-8 hours of broken sleep each night. And on February 11th i finally slept for 7 hours straight. It was the happiest day of my life. (I've slept 7-8 hours straight everyday since).

    Shortly after I decided to start hitting the gym again. For some reason though, my arms and legs both felt really strange, like they were disconnected somehow. After just a few sets on leg exercises they would tire rapidly. Then the same when doing chest and arm exercises. I managed to finish the workout pushing myself pretty hard with extra rest between sets to recover more but something still didn't feel right. Two days later i didn't feel any burn or pain from the workout, i didn't feel any stronger, but actually felt tired and weaker.

    It seemed obvious that is was due to the poor sleep i had for so long so I just rested up and ate as healthy as i could. A week later I decided to take a pre-workout energy drink and try the gym again but instead about 20 minutes later it had the opposite affect... it completely knocked me out. I was on the couch for a couple days and it took about a week before i could start getting things done around the house again. I saw my GP and had blood tests but everything was normal so just went home to rest.

    During the month of March my arms and calves starting feeling a bit heavy. This heaviness has now progressed everyday since and jogging or long walks is simply out of the question as my legs just feel too heavy and tire easy. I used to enjoy getting chores done around the house but now that too requires so much effort and is becoming very difficult.

    Also around the start of June I started to experience random muscle twitches in my arms and left eye. Since then It has now progressed to all over my body all day long. If i do any heavy lifting the twitches increase significantly.

    I've had the following tests all done twice now including full blood tests, physical tests, EMG and Nerve conduction. The results from all tests were perfectly normal.

    My review appointment after the second round of tests is in 2 days on Thursday.

    At this point i'm confident i have accidentally triggered the disease, but without any visible muscle wasting or high CK levels in my blood tests, i'm sure my neurologist won't diagnose me until things progress further

    Anyways thanks for reading and will update when i see my Neurologist again on Thursday.

    Cheers

    Michael

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Michael. You have had a horrid few months. What you've described doesn't match with anything that I've experienced or read about MND, but it's a complicated disease so I, not a specialist couldn't rule it either in or out. The gym would potentially knock us out if overdone. But it would do likewise for a range of diseases. I hope that your appointment on Thursday brings some clarity about what's been going on in your tired body. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Terry's Avatar
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    Hi Michael and welcome to the forum;

    I have never heard of :-

    "Unable to move or think, I felt liquid pumping down the back of my neck at the base of the skull down about 10cm. It pumped about 6-7 times, then stopped. it wasn't flowing down, it was being pumped out."

    Was liquid actually coming out and if so what colour etc?

    Have you had a MIR of the brain and base of skull?

    Have you had a lumber puncture and spinal fluid test?

    Certainly so of your symptoms are similar to those of Mnd but I think that it might be something else.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Michael John View Post

    I've had the following tests all done twice now including full blood tests, physical tests, EMG and Nerve conduction. The results from all tests were perfectly normal.
    Michael, that is the only relevant information you posted.

    People with MND do NOT have normal physical exams nor EMGs.

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

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