22 years old, Possible ALS

[Kapten_Ragnar]

Hello, my name is Robin Ragnarsson from Sweden. I wanted to share my story with you and i hope you don't mind.

For a couple of years ago (4-5) i started having strange symptoms. It started during night when i was waking up with numbness back of my head. I also started experience sleeparalysis/mild sound hallucinations during some nights as well. When i woke up i felt pretty groggy but not the usual tiredness during mornings.

The time went on and i still cuntinue to had this problem and while to time went on parts of my body fell asleep much easier than before...

For 2 years ago i started to wake up during night felt i couldnt breathe. When this happend my body started to vibrate for a week. I also felt very ill when this happend.

Half year later summer 2013 i started to have other symtoms, started with pain in the hands, twitching in my leg that spread quick everywhere, spasm, cramp ( a bit later ).

I also noticed that my feet got smaller during the years but thought it could have with aging to do.

2014 autumn i started having mild back pain and hard to have the back straight.

Other symptom that i started to have was a cold constant feeling through my body, cold/warm burning sensations, memory problems, problem with focus etc...

Now i know i am experiencing true atrophy through my body and weakness has really started. can barely stand on one leg anymore, small muscle on my feet are fading away quick now.

The common doctors feels to dismissive and have problem getting appointment with a Neurolog. I have sent my own and hope it will be accepted.

Before all symptoms started i know i was bitten by a tick and got a rash, ignored it becuase of bad knowledge. I also took the swineflu vaccin. I am losing extreme weight and am extremely worried. i had just found out what i wanted to do in life and know my entire life is falling apart.

Thank you for reading!

 

[skipper66]

Your symptoms are all over the place. You need to read the stickies and then consult with your primary physician. Get some tests down and then if you have further questions return to us. But, from what I read it doesn't look like ALS symptoms to me. Good luck. Kim

 

[Kapten_Ragnar]

Your symptoms are all over the place. You need to read the stickies and then consult with your primary physician. Get some tests down and then if you have further questions return to us. But, from what I read it doesn't look like ALS symptoms to me. Good luck. Kim

Thanks for the answer, Actaully i have very clear indicators of Bulbar Als. My neck has been getting smaller, More troubling swallow water. My sleep symptoms is also an indicator. I also have cracking jaw, lip atrophy and dry mouth all the time ( harder to whistle as well )

I also experience rapid atrophy in my feet and minor in my hands, my arms and legs has also getting smaller. The last week has been gone really fast, have lost alot of strength and muscle tissue mass, feeling these very small twitching eating up my muscles.

I will read the stickies now and sorry for my reply.

 

[canmark]

Please don’t try to diagnose yourself. You need to see a physician for a thorough physical examination and tests.

 

[GregK]

Actaully i have very clear indicators of Bulbar Als.

As you've diagnosed yourself there is little we can do to sway you.

Get an appointment with an ALS knowledgable Neuro, get an EMG and go from there.

 

[ECpara]

Absolutely NOTHING sounds like ALS, much less Bulbar Onset ALS. (My husband has had bulbar onset for 4 years since onset of first symptoms). For starters, you mention your "symptoms" starting 4 or 5 years ago (which means when you were in your teens). You do know that this type ALS has a prognosis of 1 to 3 years (my husband is one of the lucky few). You would probably be dead by now. Neck smaller? Trouble swallowing water? Sleep problems? Dry mouth? Bulbar onset begins in the tongue. The first symptom is slurred speech. All the other things you mention may happen after you've lost the ability to talk and eat......in the most advanced stages, not at the beginning. Your symptoms are all over the place, they actually sound like you have been reading about ALS and are picking and choosing what might fit your own diagnosis. I'm of the same mindset as your common doctors. It is no wonder you can't get a neurologist to take you seriously. Your age, unless ALS is in your family, is another reason your doctors dismiss you. If you read the stickies, everything I've mentioned is a repeat. Please find some counseling and enjoy your young life. Good luck.

 

[Kapten_Ragnar]

Absolutely NOTHING sounds like ALS, much less Bulbar Onset ALS. (My husband has had bulbar onset for 4 years since onset of first symptoms). For starters, you mention your "symptoms" starting 4 or 5 years ago (which means when you were in your teens). You do know that this type ALS has a prognosis of 1 to 3 years (my husband is one of the lucky few). You would probably be dead by now. Neck smaller? Trouble swallowing water? Sleep problems? Dry mouth? Bulbar onset begins in the tongue. The first symptom is slurred speech. All the other things you mention may happen after you've lost the ability to talk and eat......in the most advanced stages, not at the beginning. Your symptoms are all over the place, they actually sound like you have been reading about ALS and are picking and choosing what might fit your own diagnosis. I'm of the same mindset as your common doctors. It is no wonder you can't get a neurologist to take you seriously. Your age, unless ALS is in your family, is another reason your doctors dismiss you. If you read the stickies, everything I've mentioned is a repeat. Please find some counseling and enjoy your young life. Good luck.

Well it started with Sleep paralysis/Wierd sound like dog barking/door slams and numb skin back of my head 4-5 years ago. 2 years ago my breathing during nights got worse, woke up during nights chipping for air, thought it might be sleep apne. But i made a sleep investigation but i barely had any, below 10.

It was a half year before i got twithes/finger pain, tinglings in hands/feet. Now i have weakness in my entire body, cant manage the strength test of my hands anymore. It is harder to swallow water and food ( especially dry food ), breathing is harder and i get dizzy when i talk, my tongue got weaker/atrophy, cant pronounce words as good anymore, feels like i have slem in my throat but when i cough barely nothing comes up.

When i look but these things has been worser since the symptoms 2 years ago atleast.
Perhaps it wasn't als from the start but something develpoed into that ( Perhaps due to the possibility of lyme or the vaccin ) I dont know. But what else could it be? There is not much that mimicks Bulbar Onset ( ALS ).

The more i read about peoples story in this site in dephs the more i am convinced i am. Becuase of the similiarities in the stories. I have such respect to the people battling this disease, such strong people. I don't know if i will be able to do that.

 

[MaxEidswick]

>Get an appointment with an ALS knowledgable Neuro, get an EMG and go from there.

Ditto that!

 

[GregK]

You've been told repeatedly that this does not sound like ALS and you repeatedly argue that it does.
You've been told to read the sticky and obviously have not as you repeatedly refer to pain and "feelings".

Please get a referral to a neuro (as you've already been told), leave Google alone until you go to that referral, and leave _us_ alone until then also.

We've spent enough time on you and you've ignored all suggestions. Good luck to you.

 

[azwxman]

FEET smaller? Really?

 

[Nuts]

FEET smaller? Really?

It was the barking dog sound that got me. I think it's time to let this thread rest.

 

[Kapten_Ragnar]

I'm really sorry didn't mean to upset you folks, Well this will be my last post for now. I'm not kidding when it comes to my symptoms and changes of my body.

What i meant by "Smaller feet" is that i have real muscle atrophy in it, the doctors couldnt be sure becuase they havent seen my feet before but i am 100% certain.

And yes i have sent an own referral to an neuro and i will try to quickend the progress as fast as i can.

I have started to have alot of breathing problem so am looking into that at the same time.

You may close or let this thread rest if you want, But i am sure i will be joining you soon.

 

[Atsugi]

For what it's worth, the audio hallucinations sound similar to (don't laugh) Exploding Head Syndrome (look it up). Mine sound like a wooden door slamming extremely loudly. They rarely happen to me. It's rare in the population, but it's real and it's also meaningless; more amusing than bothersome, once you know what it is.

 

[Kapten_Ragnar]

For what it's worth, the audio hallucinations sound similar to (don't laugh) Exploding Head Syndrome (look it up). Mine sound like a wooden door slamming extremely loudly. They rarely happen to me. It's rare in the population, but it's real and it's also meaningless; more amusing than bothersome, once you know what it is.

Thanks. Really made me laugh a little. Sorry if i reply again but i have a few questions i should have asked earlier. How many of you expierence sound sensitivity? These sound during nights? Pale skin? Hairloss? Stomach problem? Mild paranoia and feeling you are in a bubble? I have these additional issue aswell as the other things i mentioned. Feels like my entire body giving up in all ways.

 

[Atsugi]

I've never heard anyone say those things were the beginning of ALS.