may die without diagnosis

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treatedbad

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Jun 8, 2014
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16
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
QC
City
montreal
Hello all, I'd like to share with you all my experience, it has been a very odd, experience, now that I have not been diagnosed with A.L.S, I don't need to be told by a doctor to know.
Either I didn't notice my first symptoms or this has progressed at an alarming rate.
I am 29 years old from montreal
It started about 2 months ago I was very fatigued and was suffering from depersonilization, I didn't notice any weakness, atrophy or anything ( did not look for anything)
I was prescribed zoloft for my fatigue and constant worry, from that first day it went to downhill, for the past month I noticed atrophy in my right foot and calf, noticeably smaller than left (right is my dominant side)
Went to my gp, she said looks fine, but I did notice brisk reflex in my knee ( at time did not have als on my mind)
Since then I have notice considerable atrophy in all areas of my body, abs, buttocks, face throat neck face tongue hands arms, everywhere so fast, I am also a lot weaker, have footdrop and now worst of all the breathing issues.
I have been to the emergency rooms of 4 different hospitals 3 different doctors and going on 4th tommorow.
My heart rate standing is always over 140 yet everytime I go to e.r they run tests, everything's working fine.
I have referal to neuro but wait is months long. And I had to beg for that referal.
Past week has been crazy.
I don't think I'm a hypochondriac and I'm sure if any of you or someone knowledgeable to als would view me would not understand how I'm alive and walking.
I have clear weakness and atrophy hyperreflexes
Doctors tell me I have no weakness ( but how do they know how strong I was 3 weeks prior)
My breathing is labored but my chest xray clear yetif I don't tell myself to breathe I will not breathe, my heart rates through the roof, but my heart ecg and blood tests all fine 3 times?
I am missing considerable parts of my mouth can Suck my whole face in and had visible tongue atrophy I have access saliva and find it too easy to swallow as if my throat muscles are paralyzed, night sweats, weight loss fascinations, floppy wrists and ankles, very small neck muscles that have atrophied so quickly, spend all day on couch or bed, yet all dr and family and friends have labeled me as an anxiety case. Sure anxiety can cause certain things but not atrophy, not complete loss of muscles in a month?
My assumption :
I have no idea how this all progressed this quick but
My breathing problems not caused by pneumonia or lung problem its my weak breathing muscles very weak, my heart rate is due to not being able to release carbon dioxide which is causing all these problems, I know I have als but dying in the next couple days can be avoided if someone would listen to me, I tell dr I'm not trying to insult your intelligence but I'm aloud to inquire and suggest test for my health.

Today I finally found a doctor that was willing to write referalls to whatever I wanted, pulmonary test, carbon dioxide, barium swallow for my suspection of paralyzed of weakened throat muscles and emg, gonna have to do them all private and fast hopefully don't die in my sleep tonight.
It really sucks I'm young and have everything I want in life, I know I'll die of als but I'm the kind of person that'll live on a vent until paralyzed and maybe even longer hoping for cure.
Today I do feel as if I have pneumonia my chest hurts under rib cage and since I can't cough ill prolly die in my sleep tonight.
It's a shame that this could of been avoided to a certain degree, I guess in medical field is the only service where customers never right. I have documented my whole experience so that if I were to pass people can see what I've been through.

Sorry for long first post any suggestions comments are greatly appreciated, god bless you all
 
So what makes you think you have ALS?

Usually there's a symptom or two.

My suggestion is to keep your doctors' appointments, and make one with a psychiatrist.
 
Muscle atrophy, weakness, hyper reflexes, twitches (fascs)
 
You said the doctors saw no weakness. Clinical weakness is the hallmark of ALS. As in you can't physically lift your foot off the floor.

I don't know what you're planning of dying from tonight, but it isn't gonna be ALS.

Twitches are common as your body gets older or your anxiety increases. I have plenty of twitches all over, but no ALS.

Again, try to relax and see your doctors, including a psychiatrist.

EDITED TO ADD: If you really feel you have a terminal disease and are in eminent danger, you might try getting an immediate appointment with a neurologist--on either side of the border. I personally would spare no expense.
 
Weakness is not about how strong you are today vs 3 weeks ago. Clinical weakness is about not being able to do something your muscles should be able to do. It is very obvious to doctors. But yours didn't see any. Hmmmm...

Who has measured you atrophy? A doctor?

Who says you have hyperreflexia? A doctor?

Twitches mean basically nothing.

But, of course, you have ALS. As you say, "I don't need to be told by a doctor to know." So you don't need a neuro or an EMG to see if you have ALS. You already know. Goodbye!
 
I appreciate your opinion but how can a doctor tell I have no weakness, he just met me that day, he doesn't know how strong I was 2 weeks ago, I know I was definetly stronger, dying tonight because my breathing is extremely labored when I cough I feel like it's not getting stuff from my lung, when I exhale feals like nothing comes out and if I get pneumonia which I feel I have I will die,
My oxygen is fine now but means nothing that's why I'm trying to see if my carbon dioxide levels are messed up,
Tommorow I'm going to do lung test but without a firm als diagnosis they will treat me with oxygen and make matters worse because it's carbon dioxide I need to rid my self of not add oxygen
 
Weakness is not about how strong you are today vs 3 weeks ago. Clinical weakness is about not being able to do something your muscles should be able to do. It is very obvious to doctors. But yours didn't see any. Hmmmm...

Who has measured you atrophy? A doctor?

Who says you have hyperreflexia? A doctor?

Twitches mean basically nothing.

But, of course, you have ALS. As you say, "I don't need to be told by a doctor to know." So you don't need a neuro or an EMG to see if you have ALS. You already know. Goodbye!

What I've been trying to explain is that doctors are not giving me the time of day, I'm being prescribed ativans and such. Hyperreflexes measures by doctor yes, atrophy no haven't got time to spend with a neuro . This is progressing soooooo fast its unreal so that fuels the doctors to describe as insane, 2 doctors is saw did know what als was if you can believe that, and yes I agree weakness is not being able to do something you should be doing but, you don't wake up one day and you can't open a jar, it gets increasingly harder to do correct? So yea things are getting progressively harder to do, that is weakness! I finally got a ref to do emg today and only cause dr is one of those that'll give you whatever you want. I could of told him I needed chemo and he'd send me
 
Most of what you write sounds like anxiety, but perhaps there is something real going on. However, I don’t read ALS in what you write. You might want to look for a website that supports people with anxiety issues.

>>if I get pneumonia which I feel I have I will die,

Then spare no expense and go to an ER now.

>>Tommorow I'm going to do lung test but without a firm als diagnosis they will treat me with oxygen and make matters worse

Sounds like you’re not getting what you want from the ERs and the doctors you’ve seen.

>>I finally got a ref to do emg today and only cause dr is one of those that'll give you whatever you want. I could of told him I needed chemo and he'd send me

Sounds like you’re doctor-shopping.

In total, it sounds like you aren’t going to accept any medical advice unless you’re told you’re going to die. Again, see a psychiatrist, an MD who specializes in understanding the mind as well as the body.
 
Nothing wrong with doctor shopping, when a doctor tells you, if you can walk on your heals and toes you don't have als, I mean why wouldn't I
 
Doctor shopping... Oh that brings back fond memories of a Movement disorder specialist I saw (my 4th of 7 neuros seen in 24 months) who told me it was all in my head and that I was doctor shopping.... Then 3 months later came the dirty EMG and lo and behold I was diagnosed with MND and "probable ALS" now I'm trying to get to mayo for a definite diagnosis. I think once I get the final diagnosis, I'll send him an nice letter and maybe some pics of some nice atrophy I've experienced since my visit with him... I paid 300 for an office visit so he could tell me that I'm doctor shopping...
 
Let's see what the EMG shows then.

Have you been diagnosed with foot drop? Athrophy? Clinical weakness?

You seem very dramatic, " I hope I do not die in my sleep tonight". ALS does not kill someone overnight unless the disease has progressed very far, and in those cases you would not be sitting on a forum typing.

I get the feeling you are seeking attention. Headlining your post "I might die without diagnoses". This is not the place for that. When you have been diagnosed ( not self-diagnosed ) with symptoms of something other than anxiety, then this forum is the right place for you. Please understand that health anxiety can completely take over your body and mind and make you see things that are not there. See a counsellor.
 
And, if you have foot drop, you would not be able to perform the heel and toe test. Just to be clear.
 
ALS does not develop so quick ,widespread with so many symptoms.
You have something else going .
My advice is leave it to the doctors and stop reading here.
 
Let's see what the EMG shows then.

Have you been diagnosed with foot drop? Athrophy? Clinical weakness?

You seem very dramatic, " I hope I do not die in my sleep tonight". ALS does not kill someone overnight unless the disease has progressed very far, and in those cases you would not be sitting on a forum typing.

I get the feeling you are seeking attention. Headlining your post "I might die without diagnoses". This is not the place for that. When you have been diagnosed ( not self-diagnosed ) with symptoms of something other than anxiety, then this forum is the right place for you. Please understand that health anxiety can completely take over your body and mind and make you see things that are not there. See a counsellor.

No I have not been diagnosed with anything, I have not been lucky enough to see a competent doctor who is knowledgeable with things like this, probably my fault I have millions of questions when I go in probably because all this hit so fast all at once so they dismiss my concerns and are quick to give me some ativan, not knowing I'm Completly calm I just have questions and waited for hours in e.r to get some answers
I think it has progressed very far my breathing and swallowing muscles are pretty much at zero Imo and I'm pretty much bedbound, I'm usually an energetic go getter not a weak frail kind of person in bed all day cause I can't breathe and am so weak.
 
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