Old 10-27-2018, 04:15 AM #1 (permalink)
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Default No hope...definately bulbar ALS

Hello,

First of all thank you who will read my story. It is hard time for me now and i thought over of other possibilities, that could affect my health, but only bulbar ALS pops up in my mind.

Everything started on march. I had a flu type virus for about two weeks and my left face side was really aching. I guess this brought the onset of what I am experiencing today.

It has been over 7 months since these symptoms are going on and i felt no improvement:
body wide twitching, but specific problems have been primarily one sided - left
mild cramping, stiffness
wide spread muscle and joint pain all over body
periodic nausea
muscle fatigue and overall fatigue
i can walk only short distances and i am very slowed down
my balance is poor

The most worrying symptoms began two months ago and i understood that this hell will never gonna end:
tightness and biting in my left cheek
face twitches at rest mostly - in my nose, chin, cheeks, lips, eyebrow - everywhere!
tongue problems - twitching, tingling, scalloped edges, others say that i am still not slurring but i began to talk differently like my tongue position has changed and i began to lisp and stumble on my words
saliva in my lip corners
lump in my throat, hoarseness, tight and sore throat
itching everywhere in my face - especially in my nose area

I have done a lot of blood tests, MRI of spine and head- nothing wrong and i had two clean EMGs of limbs (my left leg, left and right hands) before my bulbar symptoms began. I am waiting for my neurologist appointment on December and i am very anxious of what awaits me.

I decided to write here because my appointment is after two months and i doubt that i will get bulbar EMG in my country. To rule out ALS i guess my neurologist will ask me to wait.

I know that there is no hope and i have to plan my different and short future, but there is one thing that concerns me, that at first i had whole body symptoms and i am still now, but my limb EMGs was clean. Can bulbar ALS began like global thing? What do you think, do i have hope?

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Old 10-27-2018, 04:43 AM #2 (permalink)
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Default Re: No hope...definately bulbar ALS

Two clean EMGs and your history argue against any ALS, bulbar or not. I would pursue the virus theory and other systemic illness, perhaps with an infectious disease specialist if your primary care physician has nothing more to say. Visiting an allergist might be a good idea as well.

However, if nothing is found, it would be time to switch the focus to what can make you feel better, from massage for stiffness to tai chi for balance. I'm not seeing ALS in your picture at all.

Best,
Laurie
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Old 10-27-2018, 09:33 AM #3 (permalink)
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Default Re: No hope...definately bulbar ALS

A lot of your symptoms are sensory- pain, nausea, tingling, itching, sore throat-----none of that is consistent with ALS. I have bulbar onset ALS and it did not start at all similar to your description. This does not sound like ALS at all. And even if you had textbook symptoms, which you DONT, no one would say "definitely" before ruling out all the mimics and getting second opinions. You are getting way ahead of yourself.
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Old 10-27-2018, 10:42 AM #4 (permalink)
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Default Re: No hope...definately bulbar ALS

You do not, in no way, "definitely have bulbar ALS". You have described none of the symptoms that come with the onset of bulbar ALS, so I kind of find the title of your post offensive, both to caregivers and ones living with ALS.

You've had two clean EMGs which pretty much rules out ALS. At this point, you are way too far ahead of yourself.

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Old 10-27-2018, 11:25 AM #5 (permalink)
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Default Re: No hope...definately bulbar ALS

Thank you for all your replies! Maybe i was in a hurry with my title, i didin't mean to offend anybody. I am very respectful for those who has encountered with this disease.

I will let you know the further results of my tests and about my condition if it's going to progress.
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Old 10-27-2018, 01:07 PM #6 (permalink)
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Default Re: No hope...definately bulbar ALS

You do not have ALS.
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Old 11-13-2018, 11:19 AM #7 (permalink)
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Default

Hello,

Today i have done an EMG of bulbar area and i have uploaded the answer here. There are some abnormalities, maybe someone could explain what does it mean and is this related to ALS? Maybe you had similar results. I would be really grateful for any comments!

Here is the sheet.
Attached Thumbnails
No hope...definately bulbar ALS-20181113_172906.jpg  

Last edited by Nikki J : 11-13-2018 at 12:10 PM
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Old 11-13-2018, 12:17 PM #8 (permalink)
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Default Re: No hope...definately bulbar ALS

What were you told? And what does the summary say?

This is not the EMG of ALS at all. I believe that it MIGHT raise a question of myotonic dystrophy but you MUST discuss it with your doctor as , as with ALS, it is a complicated diagnosis and the whole picture needs to be evaluated. However, again, no indication for ALS
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Old 11-13-2018, 04:27 PM #9 (permalink)
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Default Re: No hope...definately bulbar ALS

Thanks for the reply, Nikki. My neurologist said that i need to repeat MRI of head (i did my MRI 6 months ago and it was ok) and my fasciculations is not related to a primary muscle disease. In the summary she highlighted myokymic discharges in nasal and orbicularis oris muscles, i don't know what it means. Could it be that chances in ALS increased? Are there any other reasons of this abnormalities?
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Old 11-13-2018, 06:08 PM #10 (permalink)
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Default Re: No hope...definately bulbar ALS

ZERO signs of ALS in this result - congratulations!
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