Worried about Potential ALS diagnosis or FND

Callmerouge

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Hello Everyone!

My name is Sean, I am from Canada currently living in Japan, and I have experienced neurological symptoms for the past 7 years (since grade 10, 16 years old) now 22 years old I have gotten almost every test in the book and tests keep coming back negative all leading nowhere... I have predominantly sensory symptoms (feels like half of my. Body doesn't belong to me and loss of sensation) and this weird feeling that my vision is split (right and left eye) I have not had an EEG but a NCS and a brain and spine mri (2 of each) also many blood tests and neurological examinations. But, they all tell me stop worrying about ALS you don't have it. I have worried about ALS since high school and I can't seem to get it out of my head, either that or MS...

Recently (day after another neurological exam) I got twitches on my shoulder and leg and hip... Hours after the exam (in which I was told I have no weakness nor functional weakness) I should also mention I have have a congenital posterior arachnoid cyst that I just recently found out about while living in Japan, and boy oh boy... That sent me down a rollercoaster of emotions and questions. But it's aysymptomatic and hast grown. I occasionally feel like I have weakness down the right side of my body like a complete split from top to bottom.

The sensory symptoms have never left me and only get worse during high times of stress or when I get the flu or bronchitis something like that. But, they never go away and I am not malingaring or faking anything for attention whatsoever! I will be getting married in Japan next December and I have to leave my fiancé for 6 months while I had back to Canada to get all my stuff and to see family for a while before I make the permenant move to Japan, so I am dealing with allot right now both physically and emotionally.

I also feel like my typing is getting worse, although I am able to ride my bike everyday to and from work. And walk up mountains and all that... I also started to develop bad brain fog and it seems to have gotten worse since December, so that's scaring me the most out of all my symptoms right now besides the weird sensory smyptoms... And of course the coronavirus.

So as you all can see from my story is that I am very worried and stressed right now, and I don't know if what I have is ALS or something functional such as (Functional Neurological disorder) which is very hard to diagnose which is why I think It might be that instead... I also have devloped heart palpitations and occasional stomach issues but an upper endoscopy showed a normal stomach and esophagus besides a begnin polyp. I also had an echo of my heart and EKG done 4 times showing results of a slight (sinus tachycardia) thanks to everyone who has read through my story and my worries. Much appreciated,

Sean
 

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ShiftKicker

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Have a read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

Nothing you have listed falls in the usual constellation of symptoms that indicates ALS. Twitching is so common and you seem to have mostly sensory issues- and you have identified your stress levels are a trigger. You also talk about other issues that have nothing to do with ALS, much of which could be relieved by directly dealing with your major health anxiety.

It sounds like you already know what the folk here are going to say though. I do wonder if you'll believe anyone on this forum if you won't believe or be reassured by actual neurologists.

Congrats on your upcoming wedding!
 

Callmerouge

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Hello Shift Kicker,


I really appreciate your reply. It has helped me allot, honestly; I know what I am mentioning doesn't sound like ALS and I have had many tests to disprove ALS. I also should have clicked on to the idea that I have had these symptoms for seven years, and there would have been a point where I would have had severe motor impairment.

Once again, I really appreciate you responding to me despite the fact that I am just your typical hypochondriac..

All the best,

Sean

Have a read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

Nothing you have listed falls in the usual constellation of symptoms that indicates ALS. Twitching is so common and you seem to have mostly sensory issues- and you have identified your stress levels are a trigger. You also talk about other issues that have nothing to do with ALS, much of which could be relieved by directly dealing with your major health anxiety.

It sounds like you already know what the folk here are going to say though. I do wonder if you'll believe anyone on this forum if you won't believe or be reassured by actual neurologists.

Congrats on your upcoming wedding!
 

Callmerouge

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I have now started to worry again. It's appears that I am starting to get atrophy in my wrists and arms, as they are appearing smaller. It's really scaring me and freaking me out. Not sure what to do at this point, and I'm still getting the occasional twitch somewhere in my body...
 

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affected

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Photos are not useful - your hand looks normal to me.
No need to worry unless your hand fails.
Please get a doctor appointment, a tele-visit will be fine.
 
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