If your doctor says.....

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"some noted weakness in quads and calves" does that then constitute "clinical weakness"? This was my GP, not a neuro (still trying to get myself to Hong Kong). Actual neuro appt in the states in January did not note "weakness" and EMG of my arms was clean, although my arms are not where I'm having my current problems...it's mainly my back down through to my groin.
The emg still picks up things well before any noticeable problems. I had problems a long time before I finally broke down and went to the doc tor. I had problem with my right leg for several years. It wasn't until my left arm was just about halfway gone did I pursue a new neu rologist.
Unfortuantely, how the jargon of doctor notes works is different in different regions. I'm not sure in china if that means the doctor detected weakness on a clinical exam, saw a gait change, or just was recording you complaining about weakness. And I'm really confused why you would get an arm EMG if most of your symptoms are elsewhere, they typically EMG the most symptomatic limb.

If this was in January and you are still able to run, jump, pick up things, etc in October, I wouldn't be worrying about ALS, though.
Ugh...sorry for any confusion. I should have added on to my original post instead of starting a new one. That would have been less confusing! I'm going to try to do a "timeline" of sorts here. If nothing else, to help myself analyze what happened when. The lines are so, incredibly blurred for me. I think that's part of the reason I've been sick for a year and a half with no diagnosis. So.....here goes (bear with me).

Six years ago my first child was born. Soon after, back pain started and has been off and on since then. I blamed it on an epidural and just being a parent (all the bending, lifting, etc)

15 months ago my health fell apart overnight. I was 32, healthy, active, worked a full time job, exercised every day, had very little stress.....loved my life. Out of the blue I have two random fainting episodes, seizure type activity, dizziness, massive fatigue, insomnia.....the list goes on. Had every blood test under the sun.....nothing! Finally went to a neuro in December as my GP wanted to rule out MS. At that time the neuro sort of "threw in" an EMG as I had mentioned some tingling and weakness in my arms (nowhere else). Nothing remarkable came of he EMG or MRI. I was dismissed as anxious and sent on my merry way.

Over the last year. My health has not really improved, but I did manage to have several good months in a row. I was feeling optimistic. Still, I'm tired all the time, my body feels tired, weak, limp, painful (constantly). Again, I made excuses. I assumed it was because I've gained weight, have been working out less and less, have become more sedentary due to the extreme fatigue.

Fast forward to two weeks ago. Something just changed in my body. My core feels so weak, like it can't support my weight anymore (I'm not overweight FYI)....I'm having horrible back pain....not sure if it's a spasm, pinched nerve.....what? This is what has landed me here. I'm not sure if I'm even close to what some of you experienced, because the lines are so blurred as to when everything started.

So long story longer....my GP here in China (yep I moved to the middle kingdom during all this chaos) did a brief neurological work up in the office. His observation of "some weakness" was in response to my ability to push and pull my legs hike he was holding them. He's not a neuro.....and ho knows, maybe he's just strong. All I know is that I'm in a ton of pain (I know not typical in early ALS, but again.....my onset is debatable which is why I'm freaking out!)

I'm supposed to fly to Hong Kong on Friday where they will do another EMG (my back this time) and a lumbar puncture....possibly an MRI.

So that's it. Thank you for listening....I truly, truly appreciate everyone's comments!
Hope you can get some answers on Friday.
good luck and let us know how it turns out.
I'm cracking up that I said "ho knows". I meant who knows, but coincidentally my doc is Doctor Ho. Haaaaa let's pray Ho knows nothing about clinical weakness : )
And thank you for your response Deb. it means a lot to me....Beky and Toto as well!
Honestly, hon, it sounds more like you have damaged something in your neck or spine?

Have they done a cardiac work-up to rule out anything in that area to rule out causes for the fainting? Is your blood pressure very low? Have you been checked for fibromyalgia? Pain is the hallmark symptom, along with poor sleep and overall fatigue.

If it is something like fibromyalgia, walks and whirlpools will really help with the pain. I've had it for nearly 30 years. It's very real and can be debilitating.

Have you had a spinal MRI? Did they do an EEG and brain MRI to check for causes for the seizures?vwere/are you taking any new medications!

Nothing you report sounds like ALS, but, I'd certainly want some answers!
I have had a full cardiac work up. Nothing remarkable came of it, although I did faint on a tilt table test and they basically said "common faint" and sent me on my way. Blood pressure does tend to run a little low, but I am usually able to handle it with good hydration and a careful eye on my electrolytes.

Fibro has been a definite thought of mine, but I've had a negative ANA and CRP (I think that's what the second one was) and my GP felt pretty comfortable ruling out anything auto-immune, although I'm not sure that includes MS?

I had a c-spine and brain MRI, which came out normal as well. At that time, I wasn't taking any medications. I still am not...except a multi-vitamin, magnesium, calcium, and B12.

My neuro appointment in Hong Kong is tomorrow. I'll keep you posted.

I'm grateful to you all : )
I'm scratching my head and trying to figure-out how on earth your story has brought you here and in fear of having ALS. It couldn't be more "NOT ALS" if you tried. Your story is not the story of someone with ALS, and quite frankly, doesn't sound life-threatening in the least. Relax and let your physicians determine what is happening to you . . . if anything.
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