Need an advice asap, idk what's going on!

[mattias]

Hello people, so as you proably see, I'm quite scared. So my story is quite unusual for als suspection, but I'm that anxious, that I really need to ask here. So I came from abroad, a lot of workout, running etc. On the first day after I came back to my home, my left arm suddenly "died". I couldn't use it, it was really weak and stiff. After like 2 days I started to get a LOT of tingling etc. All over my body, also I felt like my muscles were burning a couple of times, sweating that much like my bed was all wet. So a couple days passed and my arm was getting better, but 1 week after this problems my left arm and leg, again, got really weak. A couple days after this all events my left forearm and face gone numb in like 3/4. My butt got really small and it's muscles got really weak, after a previous day where I felt that my back is was weak, it hurted and was completely numb. Then it all started to fade out, the only thing that's still with me after this crazy month is numb and weak left arm and also left leg, I have a feeling like something is my throat and my voice appears to be kinda hoarse. I have 20 y old.

Btw. sorry for my english grammar, it's not my native language.

Edit, MS got rulled out, boreliosis too.

 

[ShiftKicker]

Hi there-

I am hoping you have read this and been reassured already: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms .

Symptom improvement, sweating, numbness, pain and tingling all point to something other than ALS. I'm glad you're obviously working with a doctor, as those symptoms must be very worrying for you, but ALS is not something that presents like this.

Please take care

 

[mattias]

Thanks for your answer, but it keeps getting worse and I can't really tell what's going on. Most of my symptoms appear to be very als-related. For example, I have a clear difficulty with swallowing, visible atrophy of my hands and forearms, especially my butt which was the first symptom, it completely collapsed. My face muscles are getting weaker, like left side of my body. No noticable failure over a month. A lot of involountary muscle movements, usually close to spine and torso areas, they are jumping really fast, like machine gun. But some of my parts of body keep going numb, even my butt. My forearms are numb in half;3/4 persistently from 1 month. My joints hurt a lot, my muscles tend to "burn". I'm sweating as hell, too. Also, my age - I've heard that it's realy rare that 20 y old person could get ALS. Do any diseases mimic als in so strange way?

 

[Nikki J]

Yes ALS at 20 is very very very rare. As Shiftkicker pointed out you have a number of symptoms that point away from ALS. ALS is a constellation of symptoms. You may have some but those are not unique to ALS and as stated you have symptoms that sound like it is something else So you need to continue to work with your doctor and discuss what further tests you need to find out what the problem is. They will look at the big picture and hopefully you will have an answer soon.
there are many many things that can go wrong with the human body. It is your doctor who will figure it out.

good luck

 

[mattias]

Thank you, I really appreciate that info. Stay safe people, no matter against what you're fighting.

 

[lgelb]

There are a number of ALS mimics, but what you describe isn't close enough to ALS for me to even think about mimics. As has been said, keep working with your doctor.

Best,
Laurie

 

[mattias]

Hello, It's me again. Just wanted to ask some questions as my appointment is in like a couple of days and I'm going to have an EMG pretty soon I guess. I want to summarize all of my symptoms and ask again about your over all opinion, if it's gonna point out to something other than ALS I'm out from here for now at least. Please, at least try to understand the fear that I'm expiriencing, I'm only 20 and that's completely overhelming.

What should I expect from my doctor and should I tell them that I highly suspect atrophy of my muscles? Should I tell them about even the most stupid things that I noticed?

So as I said - first of my symptoms were pointing out to something other than ALS - numbness, burning pain, joint pain and paresthesia in general.
1. After a 2 weeks of feeling like my body was burning - my butt muscles completely colapsed - the atrophy started here I guess.
2. Numbness was also present on my face, lower back, neck and butt.
3. My muscles started to twitch all over my body, my tongue too in the "rest" position.
3. My arms and feets don't feel any pain and touch is recognized only by temperature.
4. Then my forearm, hand and feet muscles started to waste in short period in time - no increased weakness or failure therefore (Still, my left arm is mildly weak, feets too).
5. I feel that my face muscles and eyelids are getting weak.
6. I guess my weakness really started in the back , chest and neck muscles.
7. Finally, a couple of days ago I started to develop involountary limb, head and torso jerks, for example I was reading a book and my left arm just randomly "threw" it on the right side or my head turned back really fast. It all just scares me, I feel like my body is living it's own life without my control.

I do not have anyone in family that could be associated with any of genetic or familial types of "serious" neurologic diseases.

Is point 7 associated with ALS, specific for motor neuron diseases? Or is it something completely random one?

Again, idk if I'm posting here becouse I'm seeking a help or anything but I really had too. I feel that a lot of people are posting here with really stupid reasons but I'm literally seeing my forearms shrink in size where people are scared becouse their muscles are twitching for 2 days.

So, thanks in advance for understanding, I feel like it's kinda therapeutic to post here and if you don't mind too much, I will try to update my diagnosis process here.

 

[Nikki J]

No it still doesn’t sound like ALS

please do not post again until you have seen your doctor and have either a diagnosis or a plan. We have answered your questions to the best of our ability. We do not have the resources to keep repeating ourselves. Write down everything and tell your doctor

 

[mattias]

Hello again and hopefully for the last time, so my EMG was done today and I got a results. They said that everything is completely fine and my EMG is clean, does that prove that I can be sure in 100% that I do not have ALS or any other motor neurone disease? I've heard that you can't do EMG too early, and if you have a visible signs and EMG show no abnormalities, you're fine for sure, is that correct? Am I fine?

 

[Nikki J]

you posted your ncs not your emg but yes a normal emg clears you. You already, as you repeatedly told you, did not have an ALS like symptom presentation.
congratulations

 

[mattias]

So yeah - I had only NCS then, becouse they said further testing is not required if NCS is good.