Please needing Help 23 years old.

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Ssoraia2016

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Hello and tank you to all people to take time to help,
Firist I want to say apologize for my bad english,Im from Brazil.

Here is my history, I need so much of yours opinion.

My name is Soraia Im 23 old male, all this start in october of 2015 when I start to have fasiculation (twching) in my entire body I go to neurologist and he noted I have brisk reflex in my two kness symetrical and I have holffman reflex symetrical to. I don't have Babinsky our clinical weeknes
He said it normal in young people. But he do one FULL BODY EMG including the tongue.

The result of EMG was very clean and he said 100% certain you dont have ALS, ok but im very anxiety person,and keep going and googling and learn much about ALS,

In March of 2016 new symphtoms apperad,im start to fell pain when I swalling,and now since April 2016 im have the felling my tongue is heavy,and im sluring some words in letter S and R but this comes ang goes,no one seems to noted, just me, my friends say im perfect normal. Im very desperad with this.

Now Im with, brisk knee reflex, holffman reflex, fasiculation in all my body, pain to swalling, sluring the words (no one seems to noted just me), Im DON'T have babinky,clonus our clinical weekens.

I Saw to 6 neurologist, do 11 EMG (all clean) october until July,
I have I clean RM to,and CK blood as 261. all other blood test are fine! test to lyme and Gravis Miastemia to All negative.

some knowledge people in this forum,saying CLEAN FULL BODY EMG is no ALS but I saw the history of BlueTrain on this forum,this guy have 3 clean EMG and now have ALS.

I dont Know what do anymore!!

Tank you soo much!

Soraia
 

Vincent

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If you will not listen to 6 neurologists and 11 clean EMGs, I have no idea what we can offer. If it will make you feel better, I can say it. You DO NOT have ALS. Hope it helps.
Vincent
 

GregK

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If 6 neurologists and 11 clean EMGs can't convince you, exactly what do you expect from us?

If you have anxiety as you say, then you're a fool for feeding it with google searches.

Go work on your anxiety and your ALS fears will vanish.
 

Nikki J

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The difference between you ( and other anxious people who bring this up) is his clinical exam was abnormal from the start. It is not that unusual for those with UMN dominant ALS to present that way.

Your clinical exam was not abnormal as his was. Brisk knee reflexes are common especially among the anxious. Meaningless. Bilateral Hoffman's also means nothing in this context.

As for twitching , the speech issues noticed only by you and feelings in your throat- none of those matter. What matters is 6!! neurologists said you were fine. 11??? EMGs in less than a year? That kind of doctor hopping and excessive testing says to me you need to address some anxiety
 
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Ssoraia2016

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Tank You Nikkie, but what give me crazy is all togheter brisk reflexs + holffman + fasiculation in all body + now swallaing pain + sluring the words.

Yeah I need to work on my anxiety but I dont think anxiety is the couse of I feel pain in swallaing and slur the words.my tongue seems heavy and looks Im strugling To speak.
 

Nikki J

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I heard you the first time. I gave you my thoughts as did my friends. You don't believe us. No surprise. You did not believe 6 neurologists. There is nothing more to be said. Believe what you wish. We can't do anything more than we have
 

Ssoraia2016

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Tank You again for hear me Nikki, but I need to say, In Brazil we dont have good neurologist like in the USA and other places. We dont have one neuromusclar good in entire country. And ALS is not comum here Like the USA.

neurologist here almost know nothing about ALS,I watching this fórum for almost one year and admire You,Mike,tillie, and many others ho take time to help people. Something os gonna happing with me. I need much of You guys help tô really know if I have Als our not.

Tankyou again.
 

affected

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honey WE know ALS and you don't have anything remotely like it.

Please we can't help you but wish you all the best.
 

Ssoraia2016

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Tankyou soo much Tilie! You Like aweys soo kind and adorable with everybody! Im watching all of yours for almost one year, Im still waiting Mike and Leonore, bluetrain opinion. Tankyou all!
 

starente15

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You do not need anyone else's opinion at this point. You're taking the time of people who are terminally ill and those who care for them. It's rather distasteful and disgraceful. You have been CLEARED of ALS. Go treat your anxiety and stay off the Internet.
 

Ssoraia2016

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One update I start choked with food today in lunch! Im very sad and desespared!
 

affected

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Go to your doctor.

We cannot do anything to help you - depression and anxiety are treatable and only a doctor can put their hands on you and figure your issues out.

You must now respect that this is a site for people who are terminally ill and we need our energy to look after them. You are scared I know, but you have no idea what this disease is really like, so please step back and stop this. I say this for your own good.
 

Ssoraia2016

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I undertand you Tilie, but my im very afraid and inside a new situation was never nobody see before on this fórum, Im insiste a country don't have ONE neuromuscular neurologist! Im very hard tô swallaing and sluring very words! You saw bluetrain history the guy have 3 clean MG im dont have Family, Im alone and needing soo much of this fórum help! Sorry nas tankyou again.
 

affected

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ELEVEN CLEAN EMGs

We cannot help you, we are strangers who cannot see you.

I'm sorry you are scared but you must work with doctors and stay off here. The only help you need from us you have received, and you need to leave as we have all said this is NOT how ALS works.

No more replies saying "I understand, BUT".
 
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