ALS Support Community

M
mevandavis123
I know. We all four have heard that. Very strange.
K
konus3791
How are things on your end? Any changes or news?
M
mevandavis123
Still losing muscle. It’s gotta be als.
K
konus3791
got my emg moved up to tomorrow. anything you wish you'd have asked after yours? just wanting to be prepared.
Andrewfung28
Andrewfung28
Can it be done too soon?. If it’s done in one area, will it detect anything that started in a different area. For example, if it’s done on the limbs, would it pickup a Bulbar or respiratory manifestation?.
K
konus3791
found out i have cervical spondylosis from an xray. any of you have similar issues?
M
mevandavis123
Not that I know of. My emg was so quick I’m not sure he was the most experienced neurologist.
K
konus3791
Thx. Outcome was A+. 100 percent clean. I think I’m gonna take it and run. Keep working with my therapist and PT.
Andrewfung28
Andrewfung28
Great!!
K
konus3791
hopefully that in some way helps all of you too since our symptoms are all so similar...i feel like all our EMGs collectively are good signs. though it doesn't solve what's actually going on
Andrewfung28
Andrewfung28
Did you get a chance to ask any questions?.
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konus3791
I did. he was pretty emphatic nothing was wrong. said you're 100% fine and healthy....some people have benign twitches, it's common. i still am pursing my back and long covid potential, since i still feel like something else is wrong. but i'm not going to stay in this rabbit hole until something else convinces me otherwise.
Andrewfung28
Andrewfung28
I hear you. Definitely great news.
Andrewfung28
Andrewfung28
Hey Konus3791. How are you doing?.
K
konus3791
not bad. legs are still my biggest concern freaking me out; they get tired quickly. last night was best sleep in months. quit taking the clonazapam 2 nights ago too. still concerned about urination and some drooping on right side of my face/eye. but i'm trying to stay out of the rabbit hole. i have to believe the test because w/everything i've been experiencing i have to believe it would have picked it up.
Andrewfung28
Andrewfung28
Yeah man stay positive and get out of the hole if you can. Terrible place to be. I’m trying to believe the test as well. But it’s kinda hard when I’m still not improving. In fact, I feel like I’m declining. I guess I’m just praying for a turn around soon.
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konus3791
Do you have any medical appts coming up soon that may help get you some answers? Hopefully your doctors are trying to help you. Thankfully I have a great internist.
Andrewfung28
Andrewfung28
No I don’t. I had an appointment with a rheumatologist on Monday. She sent me for some blood tests which all came back in the normal range. I told her my symptoms and she did some minor strength tests and Sid she thinks I’m suffering from long Covid. Not sure about that though. I might be suffering from the effects of Covid or more likely, the vaccine.
Andrewfung28
Andrewfung28
I definitely would like to see another neurologist. Preferably one who specializes in MND’s. I’m beyond frustrated at this point though.
K
konus3791
I agree. Covid or vaccine is a similar concern for me.
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