A strange thing happened just after lunch. Felt very bad. Extreme spasticity in legs and lots of rapid shivering in legs and lower arms. Some Reynaud's in fingers of both hands. Shaking. Started to feel nauseous. Eventually threw up - twice, half-hour apart.
Legs useless. Couldn’t stand up.
Must have picked up a stomach bug.
Had a nap, now feeling much better.
What’s interesting was the effect on the nervous system. I guess when you have AMN everything multiplied by 1000.
Hope I can get upstairs to bed……
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COwithAMN
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Hi, hoping your feeling a bit better. It’s frightening when these things happen. I went to the bathroom on Wednesday night, couldn’t walk back to bed! Had an awful pain that started in my right knee and went up to my lower back. Made it back with help but it lasted all the next day. Eventually put it down to some sort of static pain. As you say everything is magnified, not sure 1000 is enough though.
Thanks. Yes, it's very weired the way "normal" upsets get magnified. My poor wife was worried. I guessed eventually that when it seemed like my nervous system was falling apart, it was in fact a stomach bug. Threwing up confirmed it. Never been as as pleased to barf!
So sorry to hear you are unwell. It is odd how even normal bugs seem to affect people with AMN/ALD more. Please take care have plenty of fluid and see your doctor if no better in a couple of days or immediately if it gets worse. Thinking of you, hope your lovely wife is ok must have been quite a shock.
I think I posted about this a while back, I picked up a virus and my legs completely failed me. After two days in bed shivering, throat so painful I could barely eat or drink, the wife bundled me in to a taxi and off to a hospital.
Actually, it was new year's eve. They put me on a drip, and after the bag of saline was in my bloodstream I could walk OK.
It is a lesson for all of us. Any little thing can floor us. Our bodies are already under constant assault from the AMN, we don't need no more abuse. Have to look after our health.
One thing I learned from my time over in Japan years ago, wash your hands and gargle at any opportunity. It is part of their culture, and they live forever, and they go to the doctor at the drop of a hat.
One thing I learned years ago is that most bacteria enter our bodies from our hands. We are so used to street food, eating on the run etc.
I now always carry anti-bacterial wipes or lotion with me when I travel. Use it especially when eating food that you have to handle with fingers. Sound obvious but we forget.
Anything to help avoid diarrhoea which, for AMN-ers is a guarantee of an hour's annoyance and sometimes distress.
I'm so sorry this happened and I can only imagine the terror. You won't find this symptom anywhere in AMN research and studies. But I can attest that sickness and physical stress plays an alarming havoc on our nervous system. I believed I wrote about my personal experience with the physical stress involved moving to another residence. It greatly impacted my (in)ability to walk and petrified me. My last episode of this involved adverse effects resulting with medication treating my insomnia. I woke up and I was unable to get out of bed and walk. I literally had to crawl until I could muster to stand on my own. On top of that, I couldn't even eat because I felt nausea. It took awhile to get back to "normal" after I discontinued the medication.
I'm relieved to hear you are feeling better! What a scare!
Thank you, everyone, for your kind and thoughtful replies to my little post about tummy troubles.
The main reason I posted was that I was very surprised about how something as trivial as a stomach bug could have flattened my nervous system. I thought it was useful to know. I was also conscious that the first symptoms were neurological (extreme spasticity etc) and hence, as someone with AMN, your first thought is "oh-oh, what has happened?" It was only when I realised my stomach was heaving a bit that I calmed down and told my wife not to worry.
Teaches you that you have to avoid jumping to conclusions.
A bit later, had diarrhoea which I should have guessed would happen.
Agree everything magnified, anything upsets my stomach now and have to eat very bland and small amounts. Should be half the size I am, I wish lol!!!! Glad to hear your are better Chris xx
I take antibacterial wipes with me, the worst is door handles, 100s of people used before you or chairs to pass from scooter to.
I guess this is the reason we're offered the annual flu vaccine. 24 hours is one thing but an entire week bedridden is something else. There does seem to a stomach bug or two going around at the moment. I had a bad night before going to NHNN last week and my kid's school is full of it.
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