Status
Not open for further replies.

JTorm

Active member
Joined
Jun 7, 2013
Messages
39
Reason
Learn about ALS
Country
PTY
State
Panama
City
Panama
Hello,
Hope you having good day.

I'm kinda confused right now... This thing is so weird to be honest...
Either you start with bulbar onset and move progressively.. or you start in limbs and then progression...

It's confusing because for me, 4 months ago my right leg mostly was giving me trouble... i also had some mild pain&fatigue in forearms.. (Limbs) and now, i'm having some swallowing issues with dry foods...

I havent seen a person develop ALS like that....

but well, can be anxiety... or who knows..

any insight?

Jon
 
Bulbar usually starts with slurring of speech and drinking thin liquids. I think you are letting these problems you are having take over your life. I am not saying you don't have something wrong but I highly doubt is it als.

Maybe go to the dr and see about a swallow study. But I think a a lot of this is anxiety.
 
Jon it almost seems as if you are trying to fit a square peg in a round hole as the saying goes. If your symptoms do not fit ALS (and in my opinion and it seems yours) they do not then perhaps you should look elsewhere for answers? And checking in with your doctor as Vicki suggests is definitely the place to start
Good luck
Nikki
 
Hi Jon,

Has the pain and fatigue in your right leg and forearms relented? Are you now only having the swallowing issues? What have your doctors said? I have had both legs, hand and forearms bother me for 5 months now. I am intermittently getting a dry throat now and sore tongue in back. I think I have a blocked salivary duct or gland through..since it hurts on one side only. No swallowing issues. Anyway, my EMG on my right leg (also the one giving me problems like you) was normal. And my leg pain/tightness/fatigue is finally getting better and has been for 2 weeks now. My neuro says he thinks I have post viral fatigue syndrome. I agree some of the symptoms can be weird..hang in there!
 
Jon,

You need to take it easy, man.
Anxiety is definitely going to drive you nuts.

Just make an account: How many threads have you open here in the last 7 days?
You are driving yourself nuts.
My ALS diagnosis came out of the mouth of a reputable Neurologist who specializes on Neuromuscular disorders such as ALS/MND.

I could have registered here on these Forums long before my diagnosis because I had weird symptoms, and could have started threads after threads, after threads, after threads but...instead I refrained from doing that and instead went to see a GP and an ENT who suspected that my problem was neurological rather than something else and both gave me a referral to see a Neurologist who specializes on Neuromuscular disorders and...it was HIM who ultimately made the diagnosis.

Here, no one will ever be able to diagnose you because no one here is a Doctor.

Just quit worrying because anxiety alone can make any condition even worse and rise your blood pressure.

Just take it easy, man.


Carlos
 
Last edited:
Thanks Vickim and Nikki for your replies...

@Debd4l Well, i'm still checking with Neuros as my Emg was "dirty"... Dirty in the fact that i have denervation in calves.. The study also found a back issue S1... it could be related or not..It also found cubital/carpal syndromes.. (neuropathies)

That's why i need more studies because besides all that.. i twitch a lot, i did have cramps in legs at the beginning... and now the swallowing problems with dry food..

Don't have much pain in legs to be honest, but i don't walk as i usually did.. and now is more fatigue in the forearms( which can be atributed to the nerve entrapments)..

Jon
 
I understand Carlos.

Anxiety is indeed driving me crazy... I won't lie, I'm depressed, anxious... overwhelmed by all these things...

I know i will have to check on a therapist/psych because I have told my mother several times that if i had this dreaded thing, i'll rather fly to dignitas... Then i think to myself, we all die some day, so maybe i can adapt.. maybe i can stay for my family... but is hard, being myself an emotional guy...

I'm sorry to all of you but i'm at my weakest point in my ****ing 25 years of existance...

But that's why i come here... not to really get diagnosed, just getting familiar with your own experiences... and trying to get a grip...

I'm deeply honest, for me you are the bravest people i have ever met...

I'll try relax

Jon
 
I am getting tired of this pointless stuff from you. In one month, you have posted multiple times, and never has anyone including your doctor said you have ALS or might have ALS. Now this post, it sounds like you have talked your self into it--from I have weird symptoms to ALS is weird! it isn't weird, it is horrible, and the fact that you are out of control with your fear at 25 yo is horrible too. You are not dying from ALS, so get off the internet and get some fresh air, some exercise and make some friends--maybe volunteer at a shelter and help others instead of worrying about yourself... See a therapist for health anxiety. This is July, if you are still worried in January of next year then come back on and talk to us.

I am begging you, get a life and enjoy what you have.
 
Great advice Barbie! I agree go and enjoy your life.
 
Hello Guys,

I have an app. with Neuro today since i'm getting problems with my swallowing...

Thanks for your words and the yelling, i know its for my own good...

I'll post later how it goes...

Jon
 
do NOT post how it goes unless the doctor says you definitely have ALS. When you are there, ask your questions to him, not us because WE ARE NOT DOCTORS!

Be sure and ask directly--Do you think I have ALS? and when he says no, you need to BELIEVE HIM.
 
Don't be so harsh Barbie... I know you are not Doctors.

My parents are equally worried and scared as I am, because they have seen changes in my body, movement, etc. and the sad thing is that in my country we do not have statistics for ALS nor ALS associations...

So, the few people that get it.. either go home and wait for their time to come or just end their lives..

I Do will sit and Ask everything i can to the Neuro... and hopefull, god first,
i have something treatable...
 
So, the few people that get it.. either go home and wait for their time to come or just end their lives..

What a rude and pompous thing to say...and so totally untrue. just like your self diagnosis.
 
Don't get me wrong Barbie, I know that's a rude thing to say.. But that's what crappy neuros over here actually say. I'm aware that PALS in this forum don't have that attitude.. they go through all this because they want to cherish the moments they have with their families..

In regards to my Dx, as i expected, my neuro couldn't give me concrete answers.. Seems like for him one must be walking with cane and talking nasaly with an athropied tongue in order to give a Dx, despite having dirty emg, walking problems, bit slurred speech, throat problems, hiperreflexia...

Anyway as you and others said, I will stop worrying about myself... yet i will continue to cooperate with some PALS trying to create awarness..

Thanks, see you around guys.

Jon
 
@Jon:

There is a saying:

"Don't cross the bridge until you come to it".

You are worrying needlessly about something you still don't know its outcome.

It's like, for example you suddenly start losing weight for no apparent reason and the first thing that comes to your mind is "Cancer".
However, many conditions non-Cancer related could make you lose weight. See?

The same with ALS.

There are a lot of conditions (many of them treatable) whose symptoms mimic those of ALS.

Until you don't get a firm and definite diagnosis by a Neuro, you aren't doing any good to yourself by thinking the worst.

Just do an online search of this word "Anxiety" and you will be surprised of what this may cause to your body and mental health.


Carlos
 
Status
Not open for further replies.
Back
Top