Old 11-19-2012, 02:14 PM #1 (permalink)
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Default Undiagnosed

Obviously, nobody wants to be diagnosed with ALS or even think they have such horrible disease. So this isn't so much a "do I have ALS?" question as it is more of a "what could it possibly be?" and I think this is where the anxious and stress comes from. I want to find out what it is and get it over with!

So
I'll start by saying that I did just about every blood test that is out there to rule out any disease and nothing abnormal so far with the exception of finding slightly above average levels of creatine kinase in the blood. (a level of 223) to be exact so with that my doctored order me to go see a neurologist for a EMG and NCV exam to test the nerves and muscles. the muscle test was easy to deal with, the NCV though was somewhat painful, possibly because I didn't know what I was up against, with getting electrocuted for half a hour.

both the EMG and NCV tests showed normal results. (So does that rule out ALS?) the neurologist thinks so.

now let me tell you my symptoms.
*it started with the calf and leg muscles, just an unusual weakness. nothing that I couldn't manage with. but there was definitely a tenderness.
*then I started to notice tenderness in the hips area.
*which would then spread to the forearms arms and the rest of the arms.
*I've noticed that my skin begin to change into this oily type.
*twitching all over the body, especially the muscles that have weakened. this happens sporadically

*occasionally moderate muscle pain

one thing I will mention is that I haven't really experienced weight loss, in fact it is almost as if some type of fat has developed throughtout my body.

currently right now: my legs feel very heavy, especially when I go upstairs. also, the 20 pound dumbbell that I used to do workouts feels more like a 30 lbs dumbbell now.

I feel like I'm down-spiraling with my strength. I will say, while I'm not having trouble with buttoning a dress shirts, I have trouble typing sometimes. fingers feel weak.

overall, every few days I notice that objects feel heavier than they used to so there is definitely weakness, progressive weakness, and something abnormal going on.

I've been suspecting beckers muscular dystrophy, but I've heard that happens at a much earlier age. (I'm in my early 30's) Muscle weakness also occurs in the arms, neck, and other areas, but not as noticeably severe as in the lower half of the body. and no abnormality with bones. and the neurologist ruled that out with the test.

to conclude, walking for me right now is....moderately difficult. If feels as if a magnet is underground with every step I take. I haven't fallen or anything, but I am cautious of my surrounding and make sure I don't aggravate a tendon or muscle. my arms and legs are very tender, not sure what's happening.

while I'm not physically working out, I make sure to stay mobile every single day.

I wrote all this in hopes that someone else on here also share these same symptoms and has found a solution to the problem.
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Old 11-19-2012, 02:38 PM #2 (permalink)
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Default Re: Undiagnosed

I stopped reading at - The neurologist thinks it's not ALS! That is great- especially with clean EMG.

Good luck in getting answers to your symptoms- sounds like you're in good hands!
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Old 11-19-2012, 02:44 PM #3 (permalink)
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Default Re: Undiagnosed

Did the neuro measure or test for muscle weakness? You did't mention it. I think you need to go back to the doctor. Sometimes neuro or muscle problems are hard to figure out. It takes lots of tests and time. It is a process of elimination. Sometimes it takes seeing a number of doctors to figure it out. Keep searching and don't give up. Maybe a doctor at a university or teaching hospital can help. You've been told its not als so thats good.
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Old 11-19-2012, 10:50 PM #4 (permalink)
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Default Re: Undiagnosed

HI

First, you need to understand that there is a difference between weakness and tenderness. Tenderness is sensory--thus, NOT ALS. ALS does not affect sensory nerves at all. It affects motor neurons that 'control' the muscle--not the ones that cause sensation such as ''heat, cold, tingling, numbness"

Several things can cause muscle pain and stiffness. Fibromyalgia is just one of many.

Clean EMG without anything found on the clinical exam does mean there is NO ALS.

Perceived weakness and clinical weakness are two very different animals. I'm not saying at all that something isn't going on--just that it's NOT ALS or any other MND, or the EMG would not have been normal, nor would the exam.
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Old 11-23-2012, 01:22 PM #5 (permalink)
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Default Re: Undiagnosed

Thank you gentlemen for taking the time and effort to reply back. yes, vickim, that test was for muscle weakness and as well as reflexes, and thanks notme, for that peace of mind information. what I meant by "tenderness" is that the muscles have weakened and are now very soft

moving on now, because of symptoms of also feeling an underscored dizziness, it looks like the next step is to get an MRI in case it's an early onset of multiple sclerosis(not a fatigue weakness, but like as if I was in an elevator), but doesn't that just happen to women(?)

is there a message board about "muscles" that anyone of you know of? maybe I need to be steered in that direction.
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Old 11-23-2012, 01:37 PM #6 (permalink)
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Default Re: Undiagnosed

^
since I couldn't edit my post, I need to make this correction to avoid confusion
(not a "fatigue dizziness)
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