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chrismontreal

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Jan 26, 2018
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Learn about ALS
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qc
Hi

First i would let you know english is not my first language.

I read a lot of your post like everyday everytime and i totally support you.

My story is

1- in septemver i had a lots of burning calves and when i watched at them i can saw and feel the fasciculations only in them for 1 month.I went to a neuro in october who did a emg on my calves,my thight,my back,shoulders and cervical he found some fasics but told me thats it.no diagnostics

2-in november i saw another one neuro who also did emg on calves thight bicept hand 4 limbs and said you have just some fasics.

3-at this time near mid november i was really bad sur about the desease.my symptoms were lot of weight of loss 20 pouds in 3 months,very but really very tired all day,feeling out of breath a little.I known i did nothing all day long except crying so everybody told me it s normal to lose muscle and weight if i do nothing.

4-in middle december i saw a als specialist and he did a emg but only 1 limbs and cervical and tongue for bulbar found nothing.she said 99% nothing but with one limb and rongue thats it...

5-after that i found i have somerhing in my rhroat so i went to a ENT and she said i have a salivar stasis so that why i think i have something in my throat she said it s mucus drop from my nose another symptom.

6-saw another nero who did an emg and ask for irm who is ok so send me to his collegue the neuromuscular one.

7-i saw another nero a muscular one3 weeks ago he and the als specialist told me i have no atrophy just some asymetry and did an emg on 2 limbs my back my tongue and told me he saw the fasics but that is it nothing else.But what s ro see me in 3 weeks to reassure me.
But it does not reassure at all.
I am scared with all these symptoms about bulbar to resume i have fasics 24/7 in my calves not a sec wothout plus some off them during the day in back chest abdomen stomac arm....i lost 20 pound and had 16 back with eating junk food really tired every day but really i do nothing and be tired plus the salivary stasis and i just found i have a lots of dry skin patches and found on the forum it s a symptom.
just to let you known i can drink water and food no wrong tube but sense it like i have to reswallow and it s ok and feeling rongue is tired when i speak and have to swallow saliva.

Sorry for the long story and i m not asking for diagnos but your help if you want to.
what do you think about all of my story.

ps i bad all blood test done and irm lombar sacrum and dorsal.

Rhank you. Chris
 

chrismontreal

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qc
Also for symproms it is like i have a weight in my stomac area like the diaphram failing and puahing on but i can breath without problem lying flat and when i stand maybe a stomac pressure due to the anxiety what do you think of this symptom to?
 

GregK

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You seem to have read the wrong posts as nothing you describe sounds like ALS.

You also have clean (for ALS) EMGs, and no, it doesn't matter where they stuck the needles...

However it does sound like you need to get up and exercise.

Good luck, good bye! :)
 

chrismontreal

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First of all thank you for the answer and to put my post in the right section.

I known i have seen a lots of nero and emg but it s only 4 months after the start of fasciculations so maybe it s too soon and i had only the tongue 3 time emg and 2 times the cervical for the bulbar region.
i am scared.
What do you think about all the symptoms the dry skin flakes?the weight loss?the sensation of weight in stomac and have to swallow twice ????

Does soneone here know "centre hospitalier de montreal"?i went here for the als clinic????

By the way i m 34 years old run a lots before that and lived in montreal since 9 amazing year came from france.
I know i am very anxious not working since 5 month and read and reread all of the story.i have medication for anxiety.

But one thing i call tell you is i think of you everyday even everhhours and pray everytime for you and me
 

Bestfriends14

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Skin flakiness is not a question one should seek an answer to on an ALS forum. You have had a number of clean EMGs, therefore, your questions for your health issues should be asked on a more appropriate forum. Not an ALS forum because you do not have it. Not by descriptions of your symptoms, not by professionals.

Good luck on your health anxiety journey.

Goodbye
 

GregK

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As well as not having read the right posts, you've obviously not read the Pinned Post titled

Read Before Posting
Do so.
Now.

btw, my answer stands.
And "skin flakes"? Seriously??
This makes me suspect you're trolling us, as it's asinine.
 

chrismontreal

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qc
You can be sure im not trolling you.
The skin flakes i saw that in the forum some of you describ it.The loose of weight 20 pound some of you describ it and also the fatigue.
And sone of you describ a rubber aroud the abdomen i don t know if it is the same of the sromach pressure i have

I read the before posting threat and the is some connection the fact i have problem swallowing and an ENT saw nothing.

I known i had emg but only the tongue or cervical for the bulbar.Lots of threat about rhe needle zone debate.

But you can be sure i am not trolling you i read everyday like 5 ou6 hours a day the forum.

And what scared me the mist is the fasics i had them in both calves at the same time but 24/7 and it is only 2 month ago i had the random otherone.
 

Nikki J

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There is no needle zone debate about the bulbar area. The tongue, under the chin and sternocleidomastoid are considered adequate - any ONE of these. It is the preference of the examiner which they choose.

Dry flaking skin ? In winter? In Canada? I am fairly sure you find reports of dry flaking skin in a lot of place including prenatal forums.

You were able to regain your most of your lost weight. PALS can’t without a feeding tube.

5 neuros 5 EMGs?

For your own good stop reading here. You are feeding your anxiety. Go to your regular doctor and stop neuro shopping. Follow his/ her advice
 

chrismontreal

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Thanks for the answer

Yes that s right i had 4 emg but it is 4 emg in 4-5 months is it not too close of the starting.(the other one emg only did my calf and tongue).
On the emg the all found my fasics and told me me it s just fasics no sharp wave or fibs but what do you think about the 24/7 non stop fasics calves and then 2 month later the random one .

For the fatigue and the swallowing problem i saw that a lot in the symptoms and the saliva stasis(mucus at the back of throat) plus my stomac pressure.i swear it is like someone push on the stomach everytime.

Thank u for your time.

By the way what do you think about my english not too bad?
 
Last edited:

GregK

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Jan 29, 2013
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You've now been told "no" twice.

Time to move on.

Again, good luck. Elsewhere. :)
 

chrismontreal

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Jan 26, 2018
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Learn about ALS
Country
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qc
Hi again

I understand what you said but i really have a arm pain and not the same dexterity.It s is not something about the nerve because my NVC was ok and i only had this arm done once with the needle.

Plus the fact i have to swallow twice and the fact when i speak my tongue feels tired.

I am scared really scared.

I have another appointment whit my neuro in 3 month for a follow up so i am scared if he asked to see me again there is something...

THANKS.

CHRIS
 

chrismontreal

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Learn about ALS
Country
CA
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qc
Plus everytime i swallow by the time i take my first breath there is a noise.my ent told me i have a floppy epiglottis.do you hear about that i did not have that before my health condition.And 20 pound in 3 month it s a lot weight loss.

Thanks
 

affected

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Apr 26, 2013
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Mate get to your primary doctor really fast and explain your extreme fears and get help right now.

We will be interested to hear back after your neuro appointment in 3 months.

I'm sorry but that's all we can do is hear what that appointment brings because you are not displaying any ALS symptoms and we are only able to focus on this.

You have asked and we have respectfully told you clearly that you do not present with symptoms of ALS. All the best.
 

chrismontreal

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Jan 26, 2018
Messages
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Country
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qc
Thanks again for the answer.

But nobody here thinks my symptoms is als because i saw story here about swallow and breathing plus i known it is progressive.
Plus there is also stories sbout emg not showing nothing and after some month appear.

Plus i already take medication and psycatr.

Thank you

Any body thinks my symptom rely to als?

Chris
 

ShiftKicker

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Mar 16, 2015
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Chris-

You've been given some excellent feedback. If you do not believe 5 emgs and multiple doctors, there is no way anyone here is going to convince you either. Persistent refusal to accept the answers here and continuing to ask the same question over and over becomes burdensome to the members here. Please stop doing so.

Seek medical attention for your symptoms and stop posting here. The people here are unable to help you as you are not accepting what 4 different experienced members here have told you. If you continue to ask the same questions over and over, you will be banned.
 
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