Might have ALS, How it all began..

[Chronicle]

Hello, Im a guy whos 20 and I'm new to this forum and recently started being aware of ALS. ive been experiencing similar symptoms but i want someone to tell me if there is a possibility that i might have ALS or if its something else, if its all in my head.

How it all began
i had an episode of sleep paralysis and i tried to move with all my might. and i thought i was moving but realized i wasnt.After i woke up i started having pain in left temple and woke up to a numb/sleeping eye lid and throat feeling like it was closing.


after a few days..
It got worse. i started getting headaches on the sides of my head and top. and the left side of my face felt like it was numb/sleep then watery eyes and i started feeling tension in back of my head along with stiff neck. i then started to have my back hurting. like it was starting to feel numb/ sleep.


1st ER visit...
i went to ER a but after some tests and a cat scan of my head. it revealed i had nothing wrong with my head. and i was diagnosed with cluster headache and prescribed medicine.


after 1st ER visit..
i felt great headaches were gone but except the numbness/ sleeping eyelid would come and go. and the stiff neck was gone but now my back was hurting..and i started feeling numbness on my feet and hands..

2nd ER visit.
i went to ER again and done extensive blood test and urine and it came back negative and all good. the feeling in my throat was checked and saw nothing wrong..in the end i was prescribed vitamins because they thought i had a vitamin deficiency. when ever i move my left shoulder. i hear loud cracks in my back. they dont go way...

Numbness is gone...but
Numbness is gone but it still in my back.. i do not have no more numbness or feeling of sleep in limbs. instead, however. i feel pain. in the back of my shoulder i feel like a ticklish feeling and both my arms hurt most likely in the upper shoulder. my joints were in pain but i ate calcium pill and it disappeared.

Now...
the numbness in my foot is gone but its pain when i step incorrectly or put too much pressure. i feel like it hurts in my arms around the biceps and forearms..but its type of pain that feels like someone poked it with needle. in the other hand, i do feel pain in upper arms around shoulder. the back of my shoulder feels tickleish along with my knee joint in my left leg, my back/ spine still feels like its asleep/numb but only left side. i feel weak, but i can still lift and carry other stuff like no problem. in my throat i feel like there is something and it is kind of raspy feeling. i might be confusing it with my sinus but i feel like there is something stuck but i can still fully breathe, swallow and speak correctly.. but i cant yawn correctly like i usually do and i cried about these and thought i might have als and weird enough i felt like there was something wrong bc when i was crying it stopped in midway. i sometimes feel pain in my thighs as well and im taking all vitamins essential.

i just need someone to help me understand this disease better...im the type of person that doesnt get scared easily but im afraid, very afraid. i told my family and friends and they all said im going to be fine..i already made an appointment with a neurologist and i heard ALS is detectable by EMG but could be misdiagnosed.. is it all in my head?? im i over reacting??

 

[Nikki J]

Probably And definitely yes you are overreacting. I am not 100 per cent sure there is absolutely nothing wrong with you but I am as sure as I can possibly be it is not ALS. One of my cousins is known to carry the defective gene that causes my family's ALS. His chances of getting it are almost 100 per cent. If he emailed me what you just posted I would tell him to get a grip. You are in the wrong place. Read the sticky if you want more information

 

[Atsugi]

Chronicle, I can't imagine why, with that set of symptoms, you felt you might have ALS. There's absolutely nothing in there that could be ALS.

I hate to disappoint, but I'm not going to tell you more about the disease. You don't need to know and we're kinda busy assisting people who actually are paralyzed and dying.

If you are still curious about ALS, read the sticky post stuck to the top of this subforum titled "Read Before Posting."

 

[Chronicle]

You are not the first person to tell this, but even though that is the case of anxiety. i still feel cracks in my back for days whenever i move shoulder, pain in arms and legs and minor cramps in hands. however, thank you for your response . I greatly appreciate it.

 

[lgelb]

Chron,
Cluster headaches can cause a lot of tension, pain and weird, lingering feelings in the face and back. Find a massage therapist in your area who has a neuromuscular specialty, a hot tub, and you might try some aquatherapy as well. Try to keep walking, stretching and exercising even when you hear cracks.

I am sure your neuro will reassure you also that your strength is normal, as opposed to all the PALS on these forums. Also, if you smoke or use other substances that can affect your head, try to taper off and stop.

Best,
Laurie

 

[Chronicle]

Hello, thank you for all of your responses.

Laurie, That might be the case in this point, but yet I have following symptoms that I definitely know it is not cause by anxiety.

-Both of my arms hurt a lot along with my wrists and forearm including top of my hand
Right now it hurts in my upper arms close to shoulder and hurts when I lift arms/ shoulders.

- I have feeling that my thighs are hurting.

-sometimes i get feeling of cramps in hands and legs.

-my joints hurt(left knee joint and left elbow joint, but comes and goes.

-A left part of my foot hurts in every other step I take. (which used to be numb)

-I feel like there is something stuck in throat but now that i think about it, i feel like it is my tongue that wants to back.. but i can swallow and talk properly.

Sorry, i just want to rule out of anything that can be a sign that i have ALS
I will be going to neurologist and I'm still a bit afraid.

 

[Nikki J]

None of those are ALS symptoms. Hope your doctor has an answer for you but I am so sure it will not be ALS. Don't be nervous. Stay away from ALS sites they are bad for you

 

[Atsugi]

-Both of my arms hurt a lot
-Right now it hurts in my upper arms
- I have feeling that my thighs are hurting.
-sometimes i get feeling of cramps in hands and legs.
-my joints hurt
-A left part of my foot hurts

Chron, I see you're still here, probably waiting for another opinion on your list here.

I suggest you read the sticky post stuck at the top of this subforum titled "Read Before Posting" to get a good discussion of how these symptoms have nothing to do with ALS.

We say "ALS is about failing, not feeling" because ALS affects motor nerves in the brain, not sensory nerves. "Hurting" is not how ALS comes on.

My wife's first symptom was she simply fell over with no warning, no pain, because a foot muscle wouldn't work. As the paralysis progressed over the months, there was no feeling, just muscles failing because their nerve in the brain was destroyed. No feeling.

The pains you feel are GOOD THINGS. They point away from ALS.

 

[lgelb]

Chronicle, you know that ALS can't be 100% ruled out on a forum. But this is as close as we get.

Pain, stiffness and twitching/cramps in one part of the body often move around, because you are tensing/testing muscles that you wouldn't otherwise, and because hypervigilance develops naturally as a response to pain. The bottom line is, you can list symptoms all day (we all can), but the description you have provided does not resemble ALS onset.

So I'll stand by my earlier recommendations. If you'd rather do nothing but post (somewhere else, please) and live in fear till your neuro appt, that's your privilege. But if you want to feel as lucky as you really are, visit a nursing facility, full of people who can no longer think, move, speak, eat and you might consider just how fortunate you are that you can -- yes, you really can -- do all of those things.