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Paradox

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Hi all

Hope you all had happy holidays.

I had my first EMG Nov 7th, which was read as possible ALS. My fasciculations started in my left foot/leg then right foot. I have fasciculations everywhere, but less frequent. I've even had a couple in my face. Anyways, I saw a second neurologist on Dec 19th, who I was referred to by the first, who did not know what was going on. My fasciculations on that day were relatively quiet that day; he could only see a couple in the feet. So, now I'm waiting for my second EMG mid January.

I've been in a state of hopefulness since waiting for the second opinion and now waiting for the second EMG, but now that it is coming closer, I've become more anxious.

Anyways, did anyone have fasciculations for months prior to any weakness? It's been about 3 1/2 months for me.
 

Jamiet

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Paradox, i feel your pain, i'm 32 and also anxious. What i can tell you is that you should get to an ALS / MDA clinic at a major academic center, these people are the specalist in MND. I've visited 5 neuros, and the ALS specalist, was far superior and more knowledgable than the other 4 put together... I've done a tremendous amount of research and found that what the doctors say on-line (about the fasics usu. following weakness / atrophy) is almost a myth!, I've looked up several stories where the fasics started first, so, naturally, i'm scared also.....my symptoms started with fasics , 4 1/2 months later, i'm going for a 3 day workup at an ALS clinic. Feet shrinking, hands also....all the symptoms!

Where are you from?

Regarding the anxiety, you should try Wellbutrin or something close, it will help. It's helped me tremedously. Extended Release Tranxene works well also, 11.25 MG - it's a low dose and will allow you to function during the day.

The best of luck to you my friend!
 

CindyM

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Hi Paradox. I always chuckle when I see your nickname because I remember when you told us your wife way also a physician Al said, "So does your name really stand for pair of docs?"

Anyway I wanted to tell you that aparently I was getting fasciculations for awhile and didn't recognize them as such. I thought my hands were feeling numb but the neurologist showed me that it was actually fasciculations. So yes, I noticed the weakness first but can't say for sure when the twitching started.
 

quadbliss

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Hi Paradox,

Sorry about your situation. Unfortunately I had fasciculations about a year before I noticed any weakness. You can read my ALS history on my website if you have a minute.

Mike
 

Paradox

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Thank you for your responses. Mike, I did read your web page and appreciate your sharing of it. Was your choice of 'A Brief History' related to the most famous ALS patient of all, who wrote 'A Brief History of Time?'

I was to have my EMG last week, but someone screwed up the referral, and it was cancelled. I am rescheduled for tomorrow.

Mike, I was curious, where did you have fasciculations in that year prior to weakness? Was it all over? And how frequent were they?

I am still not weak, but feel my fasciculations have spread to other parts of my body, although their frequency is not much; a few times an hour in random locations.

Ryan
 

quadbliss

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Hi Ryan,

You're right, that is a reference to Stephen Hawking. My fasciculations started in my back at about the same rate as you describe. Eventually, they were firing randomly throughout my body.

Mike
 

Paradox

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Hi Mike

Well, that's not good news. My first neurologist, for some reason, seems to be hopeful that I don't have ALS based on the fact I am not weak after 4 months, yet, I keep reading of those who had fasciculations for up to a year prior to weakness developing. She also clearly saw fibrillations on the EMG in more than one region.

I had looked, although not intensively, for some solid data on ALS presenting symptoms, but could not find any good articles. I guess I'm just going to have to remain in this state of wonder and worry, unless this new EMG just flat out looks grossly abnormal or normal. Ugh... it's in the morning.

Ryan
 

zac111

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i have read that fasciculations are not always a sign of als is this true
 

zac111

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i was also wondering if you have these fasciculations will it always cause you to have an abnormal emg any help would be great.
 

Paradox

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I am a physician, but not a neurologist. However, I do know that fasciculations can absolutely be benign, and if you have an EMG that is 'normal,' meaning no fibrillations or positive sharp waves, than you likely have benign fasciculation syndrome or some other benign condition. Now, what I don't know is if it possible to have a normal EMG with fasciculaitons at some point in time and later have an abnormal EMG, however, I do believe this is highly unlikely.
 

zac111

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hey paradox i started haveing muscle twithing in my arm and leg 4 weeks ago now mostey in my legs but some in my arms now i have aching pain in both legs feet and arms and sometimes throat it runs just a little but not far any ideal on what might progress this fast and oh yes all this with ringing in my left ear.l
 

Paradox

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Zac

You know what I'm going to say, right? What all us doctors say... you really need to go see a doctor, just as I did when my fear ran amuck. Pain and ear ringing are not typical symptoms for ALS. Please go see a doctor. It is truly the only way to get a diagnosis. And now, as I've proven, twitches can be normal or benign.

Take care.
 

davis07

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Emg dig.

Does anyone no if Emg is used to say you have als or not if so
why not give one in the first place and avoid all the mystery.

Davis07
 

zac111

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its the first test my nero ordered besides the blood and urine test ill have mine in 7 days although the pain in my legs is great now think ill make it
 
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