u/thegruntledpuffin

Hi all.

One of my favourite scents over the last few years was Whisky and Cedarwood from the Jo Malone Huntsman collection - but they've retired it.

Does anyone know of a similar alternative?

Thanks!

Today is exactly one year since I first looked down at my left calf and realised it was twitching - this was after a couple of particularly hard sprint sessions combined with a long week of 12 hour nightshifts.

I think that's the same day I first made the mistake of Googling "muscle twitching". Up until that point in my life, I'd never had health anxiety or really any kind of anxiety at all. More of a "meh, it is what it is" kind of guy. That night, I couldn't sleep because of the anxiety of what Google told me I had, and my twitches exploded everywhere on my body.

That first week, I don’t think I slept for more than two hours a night. Big twitches every few seconds everywhere, huge myoclonic jerks every time I started to nod off, soaking night sweats. Eventually I went back to work (another nightshift) and my colleague saw the state of me and essentially told me she'd handle the shift because she was worried I'd collapse. Spent the night unconscious from sheer exhaustion in an empty office!

Those first five or six weeks were the worst period of my life, without doubt. I was CONVINCED it was MND and that within a year I'd be unable to move.

My wife and I were looking to move house at the time, and all I could think was "I won't be around long enough for this to matter". I also had many thoughts about how I'd go out on my own terms - not sad, depressed thoughts. Just practical, clinical "How would I take myself out before this disease takes me out" kind of thoughts. I looked into Dignitas too. That's how sure I was that I had MND.

Found this sub at some point, and thank God for that. I crammed every thread in its history, read every linked study, learned a bunch of new words and acronyms and became a minor expert in a disease I'd never really thought about until a couple of weeks prior.

Of course - then came the strength testing. Tiptoe and heel walks every second of every day, waiting for failure. Tapping my thumb and fingers together because apparently thats a thing. Trying to check myself for clonus and babinski. Running to the mirror 100 times a day to stare at my tongue..."is it scalloped?!". Oh...and of course, examining every dip and dent in my body to check for the atrophy I knew would soon occur.

The consensus at the time (I've seen some more sensible stuff since) was that if you made it a year without weakness you were fine. A year seemed impossibly far off in those first few weeks, but here we are. For me, I started to believe I was ok and that the twitches were benign at around the 4 month mark. Life got better after that.

For those of you just at the start of your BFS journey, here are some general thoughts, advice, and things I've learned along the way.

Stress Symptoms vs BFS symptoms

During the first few weeks I was thirsty, had heart palpitations, visible neck pulse, scalloped tongue, no appetite, no sex drive, tingling extremities as well as twitches everywhere. Symptoms like that can easily lead to endless scrolling trying to find a disease that matches all those symptoms, which leads to more stress and ever-worsening symptoms. As it turns out, everything EXCEPT the twitching was caused by anxiety ABOUT the twitching. When I eventually calmed down and realised I wasn't dying, the other things went away.

Twitch Type and Location

From almost the first day, my twitching pattern was this: visible fine twitches in both calves 24/7, that I can't really feel, accompanied by big thumping twitches everywhere else randomly. A year later, this has not changed. The thumpers go off every few seconds on a bad day (usually during or just after coming off night shifts) and on a good day only a few times per day. My calves still twitch 24/7 but I still barely feel them. The twitching is now just something I live with and it doesn't bother me. During the year, I have not had a single body part that hasn't twitched, including tongue and ribs. Don't listen to anything that says certain types, locations or durations of twitch are more associated with MND than others. I've had it all.

Strength Testing and Weakness.

I did this for weeks. When you first start twitching and go down your first Google-Hole, strength and reflex testing feels like something you can control, so you overdo it. I was constantly on the lookout for any sign of weakness or atrophy. I even made daily measurements of my calves. The ironic reality is, the constant strength testing along with your anxiety ridden brain being a scumbag will CAUSE you to feel weak. Real MND failure is stuff like not being able to turn a key or hold a cup. Stop the strength testing ASAP - it'll drive you crazy.

Doctors.

I never got as far as seeing a neurologist or having an EMG. I saw my GP and she did some very basic tests of strength and reflexes. She did not make any follow up recommendations to see a neurologist or anything else. Why? Because THEY KNOW WHAT THEY ARE LOOKING FOR AND I LOOKED FINE. Yes, if you read enough case studies you'll find freak occurrences where doctors missed MND signs or someone under 40 who presented with twitching and no weakness. The truth, however, is that rare things are rare. MND isn't usually subtle and for most people by the time they get to a doctor it's glaringly apparently something is very wrong. Save yourself months of stress - when a medical professional tells you you dont have MND signs, believe them.

Pills, lotions and potions.

Get some bloods done when you start twitching. If there isn't a serious deficiency in something, then the BFS was likely triggered by something other than a deficiency and all the magnesium in the world won't help. What will help, is a good nights sleep and some relaxation.

Twitching before weakness and getting to acceptance.

The thing we all fear above all else is that we are the 1% of the 1%. We're the one who, at millions to one odds, has a presentation of MND where bodywide twitching preceeds clinical weakness. We ignore the anecdotal advice of neurologists who swear they've gone their whole career without seeing an MND patient who presents with twitches alone. We disbelieve EMG results because what if it somehow missed signs of our devastating neurological condition.

The best thing you can do is accept, as soon as possible, that without some very obvious signs of clinical weakness, you don't have MND. Move on with your life. Don't waste months of it in fear of a rare disease that you aren't actually showing the main hallmark of. Live.

Thanks

To everyone in the last year posting good, old fashioned common sense, linking studies and passing on things their neurologists have said. You guys kept me sane in the worst weeks of my life.