A couple questions...

[tphelps]

For when you have time....

1. Does the weakness proceed like arthritis? Like it's just a little more difficult / painful to do things like stand on your foot or is it just an on off switch. As in one day you can't open the door?

2. When you do exercise, even just walking around the block do your limbs feel very heavy and you are off balance when you get back but better if you rest.

I think I might have Bulbar onset ALS and I nervous about the EMG this week. I have the above for sure but I don't have any issue speaking and swallowing issues if any are fairly little. I do have fasciculations as of about one week, not all the time and typically when lying in bed, usually in my right arm which is the one that gets fatigued easily but all over my body. I also have a possible continuous fasciculation on my tongue but only when I stick it way out and look at the tip and edges. It tremors a bit. At rest it looks normal.

 

[vickim]

The weakness is not being able to open a jar, button or unbutton, or walking any type of distance. Lifting your hand or leg. Als does not attack the entire body at one time. It will start distally like a foot or hand and then progress.

My bet is myasthenia gravis. Look it up.

If you are not having speech problems that is noticed by someone other than yourself, or having trouble drinking thin liquids then you more than likely don't have bulbar.

You can not self diagnose, Watching your tongue is not a test. Only a dr can make that determination. They are trained, and know what tests are to be done.

 

[Nighthawk]

@tphelps:

Please do not get nervous and patiently wait for your EMG to be performed and discuss the results very thoroughly with your Neurologist.

In ALS/MND weakness doesn't compare to that in Arthritis, never the same.
The weakness in ALS gets worse over time, never gets better. Nor you have days when you can open a jar or pick up a gallon of milk. Once weakness takes over in ALS, muscle atrophy follows.

With ALS you can't do exercise as your muscles are wasted and atrophied. They are way too weak to engage even on light exercise. They only thing PT recommends to PALS is ROM (Range Of Motion) exercises as opposed to heavy exercise that wears you out.

I am not a Doctor, just a patient living with ALS but, based on your symptoms, it doesn't seem to me that you have ALS.
You might have something else but, definitively doesn't look like ALS.


Good luck with your EMG appointment.

 

[tphelps]

Thanks for the time

 

[tphelps]

Neuro this morning did another physical examination, told me that the fasciculations on my tongue were actually just natural tongue quivers. That took him about five seconds. Test scheduled on Monday include EMG / NCT. He was worried about the fasciculations but annoyingly when I was there he couldn't see them. The weakness / fatigue is certainly not localized. I think there is a little bit more arthritic type of pain in my right hand but it's still very strong. I can lift a 50 lb dumbbell with it if I tried but it tires easily holding up a cell phone. Crazy. Anyway we are going look at ALS (would probably be the Bulbar onset if anything), myasthenia gravis, CIDP, even test for Lyme disease, etc. It's ann odd presentation with my relapsing period and my primary symptom being dizziness with / intolerance for physical activity.

I let whoever is reading now what happens. Thank you all for the thoughts. I can't imagine what you are going through. I don't think I have this and obviously i hope I don't but I have some money yesterday to Emory University's program after reading about this disease for a week or two now.

 

[tphelps]

Emg got moved up to tomorrow. Ok guys wish me luck. Thank you all again.

 

[Nighthawk]

Emg got moved up to tomorrow. Ok guys wish me luck. Thank you all again.

Everything will be OK.
Do not worry.

 

[tphelps]

Emg was normal. He stuck the needle in 15 different places and then told me I was wasting his time in a funny way. No word yet on additional blood work but its safe to say I don't have als. Thanks to all for the help and I will keep you in my thoughts. I can't imagine what you are going through.

 

[vickim]

Well do a happy dance and go celebrate! WOOHOO, YIPPEE, go have a happy life.

 

[Nighthawk]

Emg was normal. He stuck the needle in 15 different places and then told me I was wasting his time in a funny way. No word yet on additional blood work but its safe to say I don't have als. Thanks to all for the help and I will keep you in my thoughts. I can't imagine what you are going through.

You see?
Wasn't I right when I wrote you had nothing to worry about?
You definitely do NOT have ALS so, go and enjoy your life and forget about these boards.

Before I forget, one thing you could do on behalf of the PALS who helped you here is try to help create more awareness about this horrible disease among the people who have no clue about ALS/MND so they learn what it is and what it does to people.


Take care.

 

[tphelps]

You see?
Wasn't I right when I wrote you had nothing to worry about?
You definitely do NOT have ALS so, go and enjoy your life and forget about these boards.

Before I forget, one thing you could do on behalf of the PALS who helped you here is try to help create more awareness about this horrible disease among the people who have no clue about ALS/MND so they learn what it is and what it does to people.


Take care.

I just have $1000 to research which is a big check. I still need to find out whats wrong woth me but I won't forget about this so that's not the end of it. ALS is a nightmare you are a brave person and we need to do everything we can to kill it for good.

 

[YummyDrFood]

tphelps,

I think it would be an excellent idea to "pay it forward". Do what you can to boost awareness of ALS. rue, ALS has been ruled out in your life, but I think all of the worrying and stress made you "own" the disorder. Use your experience to help PALS and CALS that could really use the help. Even if it's just spreading the word, do something. The more attention ALS gets, the better.