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Reke165

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Joined
Aug 18, 2016
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6
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Learn about ALS
Country
US
State
IL
City
Chicago
Hello, I will try to keep this short. I appreciate any incite. I understand that no one can give a diagnosis, but next steps would be helpful.

My symptoms began around the beginning of 2016. I had some facial twitching particularly in my jaw area that stayed pretty consistent. This was followed by twitching in my arms and legs. I also noticed that when I smiled my left side of my smile was lower than my right.

I was not concerned when everything started happening, but after a month of continuous symptoms I decided to see a doctor and was told to see a neurologist. My neurologist appointment came and I was given all the strength tests and passed them.

I was told that for precautions I should be given an EMG. This was done on my arms and legs. The arms were clean, but the legs came back with some fasciculations. The neurologist said that this is normal and I should relax. He has had me follow up with him on a semi-monthly basis.

When I asked him about the smile, he said it could be a minor case of bells palsy and to not worry about it.

So, for the last 5 months I have been dealing with the twitching in multiple areas and the crooked smile. I am worried that since my EMG was not completely clean and it wasn't tested on the bulbar area that this could be bulbar ALS showing as weakness in my left side of my face. Should I be concerned and ask my neurologist to test the bulbar area?

I ask him about ALS and he said he dosent believe that it is that.

Thank you again for your advice.
 
Your EMG was clean with respect to ALS.

Fasciculations mean squat as you can read for yourself in the Sticky post titled (hint) READ BEFORE POSTING.
 
Reke,

You deserve a diagnosis. Bell's wouldn't account for limb twitching. Were you drawn for Lyme and did they do imaging of your brain?

There are plenty of neuros in Chicagoland. I wouldn't wait around for this guy, personally.

Best,
Laurie
 
Thank you for the reply. I have had an MRI on my brain when this first occurred to rule out MS. It came back normal. He did an MRI on my lower back which showed some nerve compaction and slight disc degeneration.

The neurologist that I am seeing has neuromuscular experience and has seen/worked with ALS patients in his office.
 
It's good you are seeing specialists to sort this.

Bulbar onset does not present with facial drooping, but the right specialist will investigate everything. An EMG on limbs would have detected ALS, even bulbar onset so things are very hopeful for you.
 
Thank you for your reply and time.

My concern is this twitching that has not gone away. It has stayed in both of my calves for 5 months and is now migrating to my thighs, toes, and upper body for the last month. I have also been watching my swallowing more closely and have been needing to clear my throat alot as if mucus is stuck in my throat.

I have a follow up with my neurologist at the end of month and will go from there.
 
I don't know if I can wait for my appointment at the end of August. The twitching that is my right thigh is persistent along with my right foot at the same time. The thigh twitching is concerning as it is really light and I can't barely feel it, sometimes I can see it and sometime I can't.

I am in fear so I watch every step I take and always move my toes and ankles up and down to make sure I can dorsiflex. I am just waiting for the next thing to happen.
 
Reke, I /we appreciate that you're suffering, but I can assure you--as have several others--that you're not suffering from ALS. I don't know if that helps you cope or not, but I wish you good fortune and I hope you can find a website that is tailor-made for whatever ails you. Good luck.
 
Thank you for the replies and the time taken to do so.

I don't know what is going on and the twitching is progressing daily. I haven't failed at anything yet that I can personally tell. I'm just waiting for it to happen. It is not the way I should be living, but I just keep watching new body parts twitching daily and wonder when it's going to fail.

Once again, thank you for your time as I know it can be used to help out many people. I'll keep talking with my doctors to figure everything out.
 
Twitching means NOTHING mate.
 
I have one quick follow up as I know that others who come here would like help with.

In regards to twitching muscles, when is a good point to worry? If they continue on and on, wouldnt this eventually affect the reflexes or overall muscle use?

I look at individuals like Steve Gleason or O.J. Brigance who had ongoing muscle twitching, but were still able to use their muscles. It took time for the disease to run its course.

Couldn't this twitching that is occurring lead to this the disease overtime or couldn't it eventually be accompanied by weakness?

Once again, thank you for your time and I appreciate the replies. I have looked at other posts and do not want to burn out my welcome, which I believe I already have as my questions have been answered to the best of your ability.

I plan on only coming back to give updates after this post.
 
Using their muscles doesn't mean that there wasn't some clinical weakness. Really, you need to be working with your doctor on either things that are actually treatable. Wasting your time pursuing an incurable, untreatable disease is not in your best interests.
 
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