After some opinions please

pikla

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Hi all,

Firstly, being new to this forum I just want to say a big thank you to everyone for taking the time out to reply to people’s concerns as it can be a very stressful time when looking for answers to complex presentations.

I have taken the time to read through the two stickied threads above as asked, thankfully a lot of my symptoms don’t fit the ALS criteria however I do have a few motor symptoms going on that have me concerned and asking the question.

My issues started back in March approx 13 weeks ago. I’m a 39yo male who, prior to onset, was perfectly fit and healthy with no physical deficits.

While away on a camping trip I experienced a ‘turn’ with symptoms of light-headedness followed by 2 weeks of vertigo, photophobia and head pressure.

At roughly the 2 weeks mark, same symptoms still present, I was relaxing at home and had sudden onset of left sided tongue pins and needles and numbness as well as pins and needles in my right leg, and muscle twitching in both calves. Thankfully my tongue was back to normal after approx one week however I have since been experiencing intermittent burning sensations in my throat, scalp as well as what felt like some form of occasional oesophageal flutter.

At week 4 (approx 9 weeks ago) things got bad which ultimately resulted in 3 trips to hospital ED. I began to get a lot of head pressure and tingling on my face and lips, accompanied with these really intense burning sensations all over my body (arms, hands, trunk, stomach and legs) that would last for 45secs at a time and come a go for up to 2 hours during each attack. During these attacks I would have some uncontrollable shaking all over my body for 20 mins or so which, at the time, I thought must’ve been caused by adrenaline from the stress and left me almost unable to walk for a short period as my legs would be very week and jerky. I experienced 5-6 of these episodes over a 3 week period before they finally subsided.

Anyway, I’m conscious of not making this post too long so to the reason for me arriving here. Basically ever since these burning sensations and shaking episodes started I haven’t felt physically the same. My legs and arms now feel weaker, and are very shaky particularly on eccentric muscle contraction and slowly getting worse. I’ve also noticed my coordination in both my upper and lower limbs is also not what it was and not improving. Notably, I also have very poor tolerance for exercise. As someone who would train daily for up to an hour even a light 20 min session has me feeling terrible and nauseated.

Also, ever since these attacks I began to get muscle very noticeable twitches all over – left eyelid, both calves, arms and hands. My calf muscles and left tricep basically twitch non-stop, all day every day. I also get occasional episodes of internal tremors or uncontrolled shaking of my legs which can last up to 20 mins.

I have seen numerous specialists including neurologist, endocrinologist, ENT, and cardiologist. Also had a multitude of tests and MRI’s looking at CNS, thyroid, autoimmune, endocrine, and cardiac causes but everything has so far come back all clear.

The question I have for people here that know a lot more than me is given the sudden onset of weakness/shakiness and the fact I feel weak everywhere would this point away from ALS as ALS would usually begin in a single location and spread from there? Would symptoms of ALS spread so quickly in just 10 weeks? And Is such poor activity/exercise tolerance common?

The other main concern I have which prompted me to reach out is that I have also been experiencing sudden involuntary diaphragm spasms causing me to randomly inhale (no audible hiccup sound). It is only a single spasm and only happens at night when in resting bed. It can sometimes cause me to wake and has been getting more frequent. I have also been feeling short of breath in recent days. Are these diaphragm spasms something that could be associated with ALS? Has anyone experienced this?

I’m aware that a lot of what I am describing can be put down to stress/anxiety and as a result am now also seeing a psych to deal with this. I am also seeing my neurologist again in a fortnight to discuss further. He previously suspected BFS and possibly some nerve root irritation for the constant twitch in my tricep and calves and that we can do some EMG testing if there has been no improvement when I see him next.

Apologies for the long post but just wanted to provide a full picture of my situation.

Thanks again for taking the time to read. Any thoughts are much appreciated.
 

lgelb

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I see no reason to think about ALS, but would ask about a sleep study and make sure atypical migraines were ruled out. I presume you had an EKG at some point.

Sounds like you are on a good diagnostic path, understanding that sometimes it pays to go back to the mind, get that in the right place, and then see what physical manifestations remain.

Best,
Laurie
 

affected

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Definitely keep going with your doctors. The good news so far as ALS goes is that if you don't fit what we said are the big red flag issues in the stickies, and have all kinds of things outside what is describe there, then you are not looking at ALS.

Twitching is the very least of your concerns. All the best working through this.
 

pikla

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I’ve had multiple EKG’s in ED as well as a 7 day Holter monitor which all came back normal.
Both neurologist and ENT said likely vestibular migraine with aura however that was before the weakness/shakiness came on when the systemic burning sensations started.

Any theories on my diaphragm situation? Has anyone heard of diaphragm spasms associated with ALS? I think I am right in saying respiratory onset in very rare? MRI’s of neck and spine also showed no issues with phrenic nerve
 

lgelb

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We don't know what muscle is spasming but even if it were the diaphragm, that would not constitute respiratory onset w/o respiratory impairment.

You can have more than one thing, but often it only takes one thing to trick your body into thinking lots of things are wrong.
 

affected

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You really need to discuss these questions with your doctor - we don't do theories, sorry.
I hope you get answers soon, but you need to let doctors do the work on this.
 

pikla

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So I had my PFT today, was more difficult than I thought it would be and can't help but feel like I performed poorly.

The diaphragm spasms I described above have increased (experienced 4 times last night) and my shortness of breath seems to be getting worse.

Probably a silly question but I'm to ask, I was physically 100% fine just 12 weeks ago, now I can’t lie flat in bed due to the shortness of breath. Is this even possible? Can things progress that quickly? Or is it all in my head?

Anyway, I’m getting my EMG done early next week. In the meantime I won’t keep posting here and clogging up the forum. Will come back once I get the test results.

Thanks again to everyone for your thoughts and advice. It really is greatly appreciated.
 
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