Searching for some help

[alexandre10]

Hello.

I'm 23 years old (dont roll over your eyes yet pls), I live in Portugal.
English isnt my native language so I will make some mistakes trying to explain myself.

I tried to avoid posting here the most time I could because I understand how valuable time is for PALS, and the last thing I want is to annoy or make someone lose their precious time with me, but I couldnt relate with none of the previous post's i've read on this forum so I decided to create one of my own.

Well, it all started at 3 months ago, I had some fasciculations on my calfs (still do) but I didnt worry to much since it could be a million different things. Then it moved on to my right arm, I have experiencing some trouble doing usual things like, hold my phone while typing, move with mouse from pc and after I do some effort that requires use of my strenght I have some pain on my forearm, thats bilateral, I know ALS is about falling and not feeling, but it seems like i'm starting to get weaker on the right arm.

The sympton that made me do this thread is now I have fasciculations in my tongue, and now I started to get really scared. I went to the website that talks about BFS like I saw in one of those previous posts on this forum but more than fasciculations I have some trouble when I talk, its like I need to "tell my tongue" where she needs to move in other to me talking correct. I read the sticky note and I know I shouldnt check my tongue but it seems like I've having some lose os muscle in there. Its no longer plain, in the center I have small depressions. I will attach an image ( mod note. Link removed )
I'm going to see a neurologist in January of 2016, thats when my GP scheduale the appointment. But it is a long time for a guy who is really concerned, and since Christmas and all of those family reunions are coming I didnt wanted to spend all this time concerned that I have something so serious as ALS going on.

So I'm not here asking for a diagnose, because I understand that trying to diagnose ALS without an EMG its like trying to diagnose a pregnancy without peeing on the stick, instead I will make some questions, that hopefully will make understand a little bit of whats going on.

1- Can someone have fasciculations and some atrophy on the tongue (regarding ALS) without having problems like slurred speach and/or swalloing problems?

2-How fast it would be for a perceived weakness to become a clinical weakness, its just like ur fine one day and in the next you cant really use that muscle, or it progresses a little bit?


Thanks in advance to everyone who spend the time trying to get me some information about this.

 

[Green Queen]

You don't mention what your doctor says about all of this.
You have seen a doctor, right?
I really think you need to address your issues to your doctor first.
All the best with it. Janelle

 

[Atsugi]

Alexandre, your English is fine. Thanks for all the good details.

The answers to your questions are : maybe.

Wait to see your doctor, but I don't think you should worry about ALS in the meantime. I doubt you have ALS.

 

[alexandre10]

Thank you for all the answers.

Well my doctor just made the appointment at the neurologist because I insisted for. He threated me like an ansiety case. (thing I probably have since I visit this kind of forums like 15 times a day).
He did some tests to my strenght and coordination and he said I was fine, at the time I didnt had this impression on my tongue.

Since my last post I've recovered from the right hand, it feels fine for now, I still have pain on the forearms and bicep/shoulder everytime I do some exercice but I can hold things like normal people.

My tongue still has something going on, I can't really describe, but it seems like its pressing against my teeth , on the right side, and I salivate more from that side to. I dont have slurred speech or problems swalloing for now. I'm a football coach, so I often have to use my voice at high range and I didnt notice differences in that. I know bulbar onset is more rare, and at my age without any case in my family of ALS its even more rare, but I dont know...

In the last post I forgot to mention that at 3 months ago, (when the symptons started) I had a faint that lead me to the hospital, when I did some blood tests the doctors saw that I had my CK (muscular) at 10.000. Something that should be under 200, that represents massive muscular destrution, they didnt find an answer for why that happened to me. My CK was normal 3 weeks after this incident. I have a degree at Physical Education and so I've study some fisiology and anatomy at university, and I know a bit about muscles in general, I've allways been very active but I know something is wrong with me, I can't do the things I used to do before, I can still run, but like 40% that what I was used to, and the same percentage goes for all the rest of the muscles.


I'm just trying to understand every possibility and some advices of how to proceed.
Thank you all and wish you all the best.

 

[Green Queen]

I can relate to your anxiety. Really, I can.

Please, let Christmas take your mind off your concerns. Enjoy the special time with family and friends.

January is not that far away.

Easier said than done, I know, try to stay off the forums. They really aren't doing you any favours at the moment.

All the best, Janelle

 

[alexandre10]

UPDATE:
So since my last post my symptons got worse. My fasciculations are more frequent and now they are in other spots. Shoulder, feet, back muscle, forearm and today in my rib cage for a solid 2 hours, when I strech they stop. Except in calves. They're still going 24/7.

I can still run 7km, under 30min but my right hand is showing some trouble doing things that requires small movements. Playing piano, typing on Phone, etc..

So in order to preserv whatever is left of my mental sanity I will go to a Neuro next Saturday.

I will post right after the appointment. Hopefully I'm wrong...

Bye , best wishes.

 

[affected]

I'm not surprised your symptoms have 'got worse'. They are all symptoms of anxiety rather than neurological symptoms. I hope you will believe this neurologist, whatever you are told.

Let us know the result of the appointment.

 

[alexandre10]

So, just got back from the neuro. He did some check ups, (no strenght tests thought) and he said that at this point it could be a lot of things. Since I had an episode of rhabdomyolysis not long ago (3months) without an known cause he suspect it could be a myopahty from a viral source. I will do a lot of tests, specially blood tests in the next month , probably a biopsy to the muscle and EMG too. It kinda sucks , since myopathy doenst have a cure too. Will see how it goes. Cya and thanks for the answers.