My Story So Far

Okay, here goes: 49, Male, Caucasian.

About 3+ years ago, I went to open my fridge door and ended up pulling myself into the closed door instead. I thought it odd how the door was suddenly more difficult to open these days; nobody else in the household seemed to notice. About a week later, I noticed that my arms seemed thinner than I recalled--then I realized that the fridge door thing may not have had to do with the fridge.

Fast-forward to about 18 months ago. Both arms and legs steadily have become demonstrably thinner. The wasting seemed in all four limbs and symmetrical. Things seem harder, though I've not really noticed any actual deficits yet, but there is an everpresent subjective sense of limb weakness. Figured I was just out of shape. I get about as much exercise as the average veal.

Six months ago: I'm performing onstage and my part calls on me to march slowly. Find I can't--I have to catch myself each time. Balance? Strength? I become aware that I tend to unconsciously maintain a point of contact when standing. Freestanding without it, I feel...heavier somehow...and just standing becomes fatiguing. I discover it seems hard to hold up arms/legs and to stand, but if I just push through it, or shift even slightly, it gets easier and I can continue.

Four months ago: My arms and legs are like toothpicks to me and others. Tinnitus (ear-ringing) begins, unrelenting. I think perhaps all symptoms are sinus-related (chronic pressure? tumor?), See ENTs and eventually undergo sinus surgery. No sign of neoplasms. CXR and head MRI clean. I breathe more easily literally, but not metaphorically: Maybe my atrophy and weakness(?) are autoimmune? Blood work shows positive ANA, mother has lupus.

The Present: Start to see a rheumatologist. Blood is normal (no elevated CK, etc.). Doc not favoring autoimmune idea. ALS not even on my radar until I did some Web research; always thought it was an inherited condition. Found that it can be, but mostly not. Became alarmed upon realizing that certain former bad habits exposed me to massive, probably neurotoxic, levels of glutamate. Learned about fasciculations and thanked heaven I didn't have any...until last Saturday when they started. They began suddenly and are slowly cycling in multiple locations: right shoulder, left calf, index or pinky finger, lower back, right forearm...almost like some kind of very slow, gruesome slideshow or holiday light display.

EMG is scheduled for next week. Doc wants muscle or nerve biopsy depending on findings. Cause for concern?

Thanks so much for reading and responding.

I think with this going on so long, and an EMG scheduled for next week, you should just wait and see what they say.

ALS is usually faster progressing and without seeing you it's hard to have a clue what is going on but it seems more likely they will find something else.

Come back after your EMG - but have your doctor explain the results to you as they are the experts you are paying.

All the best.

Read the sticky titled READ BEFORE POSTING. You'll find a couple answers there.

Go get your EMG: very useful test. Save your concern for that.

So, my EMG was today. Some sensory neuropathy (which surprised nobody because of my diabetes). Motor seems pretty much normal, according to the doc who did it. He specifically said "this is not consistent with ALS." I'll get a full report from my usual doctor.

Therefore, though my symptoms continue, my docs and I will be looking elsewhere. I am relieved. Not as much as I thought I would be, but I'm thinking I've been so concerned for so long it's going to take my bruised psyche a little while to truly let go of the dread. But I'm confident it will happen in a little while.

You guys are all in my thoughts and prayers. Thanks for the support and info. Stay strong.

And if there's anything I can do to help (I'm a professional hypnotherapist), please feel free to contact me.

fly free now, best thing you can do is never come back here!

Congrats on the all clear - believe it!