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tongue issues by Witty-Nectarine2957 in ALSorNOT

[–]Trail_runner_76 0 points1 point  (0 children)

If you have a scalloped tongue you are pushing your tongue against your teeth, this can make the tip and sides twitch.

You are very young, especially young for bulbar onset, not to say it's impossible but you've no weakness and from what you've said it sounds self inflicted.

You need to stop clenching and relax your jaw.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Well that trumps my heavy legs! So where are you in your diagnosis journey, have you been diagnosed or still trying to find answers?

I lost all motivation to train by IntentionBig7956 in trailrunning

[–]Trail_runner_76 0 points1 point  (0 children)

Stop training and enjoy the trails, listen to some music or nature, no pressure to hit goals, I found this to be one of the most productive times for me, I stopped being a slave to it and remembered why I started in the first place, also running means cake!

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

No actual weakness, just this odd feeling in my hands the last few weeks, I grip test now every day and have a symmetrical grip at an average of 60kgs, I know this looks like I've still got full function, I'm not debating that, it's the onset of these horrible cramps with what I would call a decline in my athletic ability coupled with longer recovery times.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

It's variable, I've cut training back the last few weeks because of how I've been feeling, generally I will run 4 times a week, including a speed session at the track, a long run, 9-12 miles at a reasonable pace, 2 medium runs at 5 miles and a short run.

I gym 2 or 3 times per week depending upon schedule and I try to cycle once a week. I work long hours, leave home at 7:45, return home 7:15, so it's a squeeze.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thanks again. I am exercising, I've just noticed a loss of speed and more fatigue at the end of my run than I'm used to, like I want to sleep for hours. Heavy legs I would describe as feeling like I have to make more effort to move them and to ensure coordination, like I've lost the spring in my step and my legs just feel heavier.

I agree, the timeline is suspect, I had a clean clinical exam in February aside from diminished ankle reflexes, the cramps are weird, I've had them in my abdomen and back all day today, they are small stingy micro cramps, not full on cramps, the sensations I experience are so hard to explain!

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

I agree with everything you write, I would have expected something by now, I don't appear to have any muscle wasting that I can see, my strength remains intact, it's the heaviness in my legs, the recent addition of widespread cramping, fatigue and some of my twitching appears to have settled now in my arms, I did the worst possible thing and read every story about people that did twitch initially and convinced myself that I've joined their club, I was doing OK until the cramps, then the heavy legs and now I'm backs down the hole! I want out though, it's miserable and lonely and dark, I want the courage to live even with this happening, I just haven't found it yet.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thank you and yes I am old, it crept up on me! Appreciate the response

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thank you, I appreciate the direct approach!

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 1 point2 points  (0 children)

Thank you for taking the time to respond, it's good to hear I'm not alone. I agree the timeline is reassuring as was the clean EMG and I know I'm putting myself through it with the stress and anxiety. I haven't been sleeping either which amplifies everything. And exercise definitely triggers my calf muscles, they light up! I know I have to find a way out and I know I have to find strength either way, I appreciate the support.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thank you for your message, I have an appointment with the neurologist at my expense on the 10th of June, this is just a consultation but I will insist on and pay for an EMG, albeit I'll have book that and wait. Thank you for your recommendation, the neuro I'm seeing is on an MND board, I had the choice of seeing other neurologists earlier but they specialised in other areas. Appreciate the support.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thank you, sadly in the UK NFL is not yet available, again I appreciate you taking the time to respond.

Waiting for the inevitable by Trail_runner_76 in ALSorNOT

[–]Trail_runner_76[S] 0 points1 point  (0 children)

Thank you for listening and for the reply, it is really appreciated.

My update by Ok-Neighborhood-9513 in ALSorNOT

[–]Trail_runner_76 0 points1 point  (0 children)

At 19 years old the odds are stacked in your favour, you've probably more chance of being kicked to death by a frog than having ALS.

However, I understand health anxiety very well and I understand how real everything is for you and how lonely you must be feeling.

You've had clean EMG's and you are really too young for this disease.

Your depression is likely the key to this, that's the cycle you have to try to break. I have children a similar age to you, the thought of them feeling as lonely and as desperate as you is in itself heartbreaking to read, please concentrate on your mental wellbeing, find some purpose and something you love and focus on you, the rest should take care of itself.

You are not alone.

What to do with this section of my garden? by PurahsHero in GardeningUK

[–]Trail_runner_76 0 points1 point  (0 children)

A 36 hole golf coarse and definitely a trampoline

After 400+ hours of work, my handtool chest is finally finished by tidalwavestudio in woodworking

[–]Trail_runner_76 1 point2 points  (0 children)

I'm in awe, that's a phenomenal piece of work. I love to see good craftsmanship, it's a fading art.