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I understand your desire for the EMG, and your frustration about having to wait.

But everything you write says to me "not ALS."
 
Thank you, Atsugi, and I hope that is the case through all of this madness. It's incredibly frustrating right now, as selfish as that may be to say.

I do have more questions because something is bothering me: I went for a brief run and noticed a bunch of awkwardness when I initially started running and a lot of pain for an extended period of time (48 hours and still sore). Could this be indicative of a MND? Especially considering that I was doing a much lighter than normal workout routine. I had an understanding that recovery takes much longer for those affected by an MND because other muscles are trying to compensate for the damaged/dead ones.
 
I think there must be an edit timeout per post because I can't edit my previous post right now!

I have an EMG scheduled for this Friday, thank goodness. I'm praying for BFS, anything other than this dreaded, terrible disease. I noticed some weakness in my right leg with some fasciculations so strong that it could be seen through my clothes. After that, the twitching got a lot more fine and can only be felt and not seen. Every little thing that happens to me causes me to be filled with so much worry. Hoping for the best...
 
Hi everyone, I'm struggling to type this as I have just received my CK results and they were reported at 1,114. That is about 5 times the normal rate, which says that damage is definitely happening to my body and atrophy is happening. I am incredibly upset right now as this is a huge blow to my fight against ALS. Does a CK elevated this high mean I have the disease? I am still very much healthy and active, with only my left leg in any pain.
 
No. That makes it even more likely to be something else. What are they recommending ? A repeat test?
 
They haven't recommended anything yet as it is only 7:30 AM where I am and I have not received contact from any doctor. The results were given to me by an automated process. I don't know what they'll recommend, as I still haven't exhibited any signs of clinical weakness. I do feel my muscles atrophying, and there has been a little more trouble raising my left arm than normal but I'm not sure if this is just in my head. Last night I had cramps in my hands and feet but very little fasciculations. My doctor noted that I have a lot of symptoms of being stressed (high blood pressure, lightheadedness). These have since all gone away.

EDIT: I should note the perceived damage is proximal, not distal. I last exercised the affected area over 72 hours ago and it still has not healed.

EDIT 2: What I would like to know is what the baseline for my CK levels should be. 24 hours prior to the test I had just done some moderate exercise (running). 72 hours prior I had done some mild weightlifting. Still no clinical weakness. Is it something I should be expecting with the elevated CK? The research I've done has pointed towards equally scary diagnoses (muscular dystrophy), especially for someone as young as I am.

If it falls back down to < 1000 as baseline, does that put me in the range for potential ALS still? Is it possible that I've detected it incredibly early?
 
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Updating from the ER.. doctors told me to go myself to get an IV done. I've now got cramping in both hands, both feet, and forearms.


Annnd now my CK has been registered at over 6000. I'm very worried still. Not sure if this is still possibly ALS.
 
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Hi Telmo,
An elevated CK, especially in the thousands, can be indicative of anything from a thyroid issue to a myopathy or myositis, and or juststrenuous exercise. I would not focus on it as a sign of ALS.

You mention that you "feel your muscles atrophying". Muscles atrophy over a long period of time from disuse, you don't feel it. For example, I had very well developed leg muscles, and I could see the muscle on the front of my leg pulling away from my shin, leaving a peculiar scalloped shape. That was months after symptoms started, not where you are. Here's a story for you.

When I first began to have symptoms, my doctor felt I had polymyositis (I presented atypically, and early stages can sometimes be similar to ALS). I hadn't heard of PM, so I researched it and actually began feeling those symptoms that are only true of PM, that's how obsessed I was, and I don't consider myself to be easily influenced by subconscious fears-yet I was.

I actually created symptoms that went away as soon as I had a positive diagnoses of ALS. And, incidentally, my CK was very low.

Please continue listening to your doctor, as Dr. Google cannot put your symptoms in context of a big picture for you.

All the best,
Liz
 
LizF,

Thank you for the insight. My CK levels are still elevated, but the exercise I put in was not nearly strenuous enough (I feel) to warrant such an elevated CK, and the doctors have no idea either. The doctors did diagnose me with rhabdomyolysis, and said it would explain a lot of the symptoms, but I don't understand how I could have rhabdomyolysis and progressing symptoms.

Speaking of your polymyositis, and atypical presentation, was it also proximal weakness at first? At times I can't tell if I have proximal weakness because I can still do everything needed of my proximal muscles without aid, and am just unsure if the rest of my body is compensating until later muscle groups fail.

So many things are confusing me right now, like why there seem to be mild symptoms of ALS all over my body with many contradicting and conflicting pieces of information mixed in there.
 
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I don't know what "mild symptoms of ALS all over my body" could be. Pretty sure that points away from ALS. Esp at 26 years old.

EMG Friday, right?
 
I don't know what "mild symptoms of ALS all over my body" could be. Pretty sure that points away from ALS. Esp at 26 years old.

EMG Friday, right?


EMG Friday, as you can tell I'm not doing a very good job of keeping it together. My apologies. :(

By the "mild symptoms all over my body" I mean cramping, awkwardness, and loss of coordination. It's not a lot, as I haven't fell over completely yet, but I am noticing a distinct lack of balance in my leg. I realize that ALS is about failing and not feeling, but also seeing that cramping is an early possible indicator for the disease did not bode well for me.
 
This morning I woke up and thought I was having trouble with shivering because it was cold, but it turns out I'm twitching more sensitively to the cold. I read up on _this_ and it looks like it's in line with something called MMD (myotonic muscular dystrophy). I also woke up and realized I have some trouble generating and swallowing saliva. Could this still be conflated with ALS?
 
Please stop until after you have your EMG. This is not helping you. Log off, stop googling and wait for your appointment. You are not describing ALS symptoms, and that's all we can say at this time. Wait for your appointment.
Tracy
 
VERY much agree with Tracy. For your own mental health, you need to stay away, You keep coming up with nightmare scenarios. No one here is concerned that you might have ALS, but you keep insisting that you are dying. Get a copy of your EMG; both the summary and the data, then come back.
 
Telmo, it's no use for me to tell you anything else re my symptoms as that may only feed into your anxiety. As recommended, take a break from Dr. Google, and this forum, and let your doctors do their job. As Mike suggested, come back after you have the EMG info.

All the best,
Liz
 
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