Old 09-15-2018, 05:27 PM #1 (permalink)
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Default Does this sound like ALS?

Hi all,

I want to start by saying thank you in advance for any advice/support you can give me and for welcoming me to the forum!

My symptoms started almost 8 weeks ago, where I noticed twitches in my left arm and shoulder. They were big thumpers that I could see through my shirt which led me to Doctor Google which of course in hindsight, was a terrible idea!

After seeing what google had to say, I had a fairly substantial panic attack anf have had another 2 or 3 since then (have suffered with Health Anxiety in the past), this led me to booking a visit to my GP. He told me that he did not think it was anything serious as he checked my reflexes, strength test etc and sent me on my way.

Since then, the twitching has become widespread - I have felt twitches in every possible muscle group and in muscles I didn't even know I had! Predominantly, they are now in my right calf which are pretty much always there (some I can feel and some I can't). I have also experienced mild cramps in my calf and other parts of my body.

I am not presenting with any clinical weakness and have been able to do everything I normally would. I do have perceived weakness as it's constantly on my mind and I think I talk myself into it. No atrophy that I know of but do have the odd muscle jerk that moves a limb or muscle involuntarily from time to time and some sort of tightness/numbness around my right knee cap.

I have been to another GP for a second opinion and he also does not think there is anything to worry about after doing certain tests however, he is sending me to a neurologist for my own piece of mind and am awaiting an appointment!

I suppose the only other symptom that I have noticed is something that I can only describe as a shooting nerve pain in my right leg when I poke it a certain way and had shooting nerve pains in my right arm for about half an hour last week which then subsided.

From your experiences, is this something I should be worrying about? Would weakness typically be present by now? Would my fasiculations be localised or wide spread like mine? Would there be anything else I would be experiencing at this stage?

I should note that my twitches started a few days after my friend and I were on a night out and are certain we were spiked (my friend was confident it was MDMA as he has had it before). It has scared the hell out of me as I have read that there might be a link between ALS and MDMA.

I appreciate all responses and thank you all so much for your time!!!!

With Love,
Rory
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Old 09-15-2018, 06:26 PM #2 (permalink)
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Default Re: Does this sound like ALS?

Asked and answered by two GPs, Rory. Your mind is playing tricks. And whether you were spiked or not, X does not have the delayed onset you describe. But one too many nights out with drinks etc. depletes your restorative sleep, B vitamins, etc. which can certainly bring "thumpers" on, and even pain if your muscles tighten up with anxiety.

Take a Pilates class, walk in the woods, do a hot tub, get a massage, get on with your life. If/as you are unable to do something, that would be the time to see the GP again, two of whom now have your baseline.

Best,
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Old 09-16-2018, 08:19 AM #3 (permalink)
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Default Re: Does this sound like ALS?

Hi Laurie,

Thank you for your response, it is much appreciated!

It does seem to be all in my head. I think I underestimate how powerful the mind can be. When I mentioned the X to my GP, he had never heard of that causing ALS. Can X cause the disease or is that not true? I see that you said it would not be gradual onset. How would it present after an ecstacy episode?

I hope you're keeping well.

Cheers,
Rory
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Old 09-16-2018, 09:01 AM #4 (permalink)
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Default Re: Does this sound like ALS?

You misunderstand Laurie. She was not saying that MDMA causes ALS acutely or otherwise but rather that your symptoms did not seem to be a result of your possible exposure because of timing but that they could relate to poor sleep and vitamin issues.

There is no link that I know of or could find between ALS and MDMA but it certainly can cause other problems so consider avoiding dangerous situations in the future if you are concerned for your health

You are going to see a neurologist but your symptoms do not sound like ALS and you had no weakness per your gp so relax in the meantime and take care of yourself
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Old 09-16-2018, 01:59 PM #5 (permalink)
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Default Re: Does this sound like ALS?

Thank you both for your responses. It really is appreciated!

Rory x
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Old 09-22-2018, 05:29 AM #6 (permalink)
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Default Re: Does this sound like ALS?

Hi guys,

Just wanted to provide an update - still no neuro appointment as yet however, I have noticed/developed some other odd symptoms/sensations that I would love your opinion on.

I have noticed 'nerve twinges' which is the best way I can describe it. Sort of like a shooting, tingling sensation in fingers and right leg. I first noticed it when opening a can of juice. Still no clinical weakness but hands feel stiff (unsure if this is in my head or if they have actually become worse). Other than that, I still have the bodywide twitching and still mainly in my right calf.

What are your thoughts on these nerve sensations?

Much love,
Rory
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Old 09-22-2018, 07:44 AM #7 (permalink)
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Default Re: Does this sound like ALS?

That those symptoms have nothing to do with ALS which is primarily a motor disease. Please reframe your thinking. It isn’t still no clinical weakness. It is no clinical weakness and no reason to expect it. Please report back after your neuro visit but in the meantime stay away from this site
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