NEED HELP WITH ANSWERS

[stanley12]

Hi--
I have been an observer of this forum for a year and a half now.
18 months ago, I had fasciculations everywhere. They would come and go, but would experience bouts daily in any part of body. Also had fatigue, weakness, and crawling sensation all over body.
Was lucky, and got in with neuro fairly quick. He immediately ordered a Nerve/EMG-- it was clean-- 3 months later another one--- it was clean.
Blood work was good.
MRIs normal
Hyper Reflexive, but with no "clinical weakness"
My diagnosis was BFS, but he wants to follow up to look for "progression"
Going forward, my symptoms have waxed and waned, but recently have gotten worse. My forearms will get really stiff, making it hard to use my hands...
My left foot does not always do what its supposed to do. The fasics are all over shoulders, back, etc.
I have follow up with my neuro
My questions are:
1. do 2 clean emgs at very beginning of symptoms still rule out ALS?
2. after 18 months, would i have noticed severe disabilities by now?

I never knew much about this disease until it happened to me. I have read countless articles, and spent hours on it. It consumed my life. Since then, i donate as much $ as I can toward the association.
They need all the help they can get for this terrible disease.

 

[Bestfriends14]

Until what happened to you? So far, which is great news for you, you've not described ALS onset at all. Twitching means nothing without muscle function failure, which you do not have. Being that you've been hanging out here on the site for 18 months, I assume you've read the Read Before Posting sticky? As well, 2 clean EMGs and clean clinical exams also say no ALS. That's fantastic news.

As to why you twitch, 70% of people twitch when they are tired, dehydrated, stressed, or they just simply twitch. If you've been reading this forum for 18 months, I'll assume you know this. Keep working with your docs, but you do not have ALS and that is a good thing.

Good luck to you. You no longer need to be here.

 

[affected]

I must say that if you have been observing here for 18 months then you know exactly what we will say.
No signs of ALS whatsoever - celebrate and stop observing here for your health's sake.

 

[stanley12]

question 2?

 

[codyclan]

Yes, after 18 months you would have noticed failure. You have not described failure. Keep working with your docs. Best wishes.

 

[affected]

yep my husband was dead in half that time.

 

[stanley12]

affected--
I am so sorry.....

 

[stanley12]

HI-
I have read the stickys, but keep getting conflicting info about foot drop.
With ALS, does it happen suddenly or is it a gradual weakness of the foot/leg until it totally happens?
Thanks for any insight

 

[ShiftKicker]

Mod note: Merged threads. Stanley, please keep posting on your original thread. Also have a re-read of this thread for posting rules if you have any questions. Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

 

[KarenNWendyn]

You haven’t described ALS and your EMG was clean. So if you have foot drop, it’s from something other than ALS.
To answer your question, I was not aware I had foot drop until one day I realized I could not stand up on the toes of my left foot or my left heel.

 

[Nikki J]

It happened suddenly to me each time ( one per foot)

 

[stanley12]

thanks for your replies.

 

[stanley12]

Are CK levels elevated in ALS?

 

[codyclan]

There will be others with a medical background that can chime in on this, but no. You see ALS is NOT a muscle disease, it is a disease in the brain that affects the nerves that tell the muscles to move. No signal from the nerve, no movement, but it is not a muscle based problem. Hence the reason it's not sensory and you don't feel weak prior to failure. You are not describing ALS. Time to move on. Work with your doc, but you don't belong here.

 

[KarenNWendyn]

Stanley, this is the last question I’m going to answer before I close this thread. CK can be up in ALS or it can be normal. It can also be up in many other disorders including trauma, alcoholism, hypothyroidism, myopathies, secondary to medications, or as a normal variant— to name a few.

You don’t belong here. See your doctor if you have additional questions or concerns. I’m closing this thread. Please do not start another.