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IlliniJon

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Learn about ALS
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WI
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Wisconsin
Well, I've been lurking for months, probably like hundreds if not thousands of others. Not sure what compelled me to finally register and post...probably the premature acceptance of this disease in the back of my mind.

I've read all the stickies, and hundreds of posts. I know I can't self-diagnose (though that doesn't stop me from doing so). I won't claim to know the difference between "twitches" and "fasciculations", even though I'm pretty certain I'm having the latter. I see a neuro at the University of Illinois-Chicago next week who will do an EMG, so I know I'll have more direction soon. I'm both terrified and ready for it.

Started in Feb when I had an early stage cancer removed from my vocal cord. I'm 37 with a wonderful wife and four great little boys, so even though the cancer wasn't even stage 1 yet (just short of it), I let the stress of this event get away from myself. Over the course of the next couple months I developed pretty decent...numbness?...fatigue?...in my forearms and calves. I don't quite know how to describe the feeling. Had a stretch of 10 days in March where I had cognitive issues, i.e. my brain was 8 steps behind my eyeballs, I could hardly make words come out of my mouth, couldn't sleep more than 3 hours, etc. Tried Zoloft for 5 days, which was horrific. My hands were shaking like I had Parkinsons. I started having tongue/swallowing issues (which still continue) where my tongue felt thick and heavy and just plain dumb. A number of toes on my left foot went numb for the better part of April.

I know, doesn't sound like ALS - just another health anxiety nut at this point.

Through May and early June, a lot of this starts to gradually clear up. If I was in a stress hole because of the cancer, I was 10 times deeper once I started reading about Parkinson's, MS, ALS, etc on the Internet. I get it - turn it off. Like I said I started to and was feeling better...not like my "old" self"...but better.

Then last Friday my left foot started twitching. It hasn't stopped. :(

I know twitching without weakness is fairly irrelevant (in the grand scheme of things). I also know I can't test for clinical weakness, despite my repeated (and successful) toe and heal walking. I've read the discussions about BFS vs ALS twitching, and again I know I can't self-diagnose.

My left foot twitches constantly, mainly in my arch. Today I felt a few on the top of my foot and on my lower ankle. I don't know if I have weakness yet - I have to assume in the beginning it's so subtle you wouldn't even know. I haven't tripped on any blades of grass, but my feet and ankles and legs sometimes feel like jello...I know anxiety is playing a role in that feeling as well. The top of my left foot up through my lower ankle feels...I don't know how to describe it...stiff?...cramped? Not painful, just off.

So anyway, I'll go see the neuro next week, but I'll be honest in that I've already started the grieving process. I know it's premature and this is all just speculation and conjecture, but things just don't add up. I can only blame so much on "stress" and "anxiety", and I'm not buying that it would be causing such specific symptoms. Things just don't feel right.

Thanks for listening,

Jon
 
Wait until doctor mentions ALS, then worry. Read the sticky about perceived versus clinical weakness.
 
ALS does not "clear up".
 
You're right to say it all sounds like stress. Some of your symptoms could be many other things. ALS is really rare, so I wouldn't jump to that conclusion without an EMG.

The one thing you haven't mentioned is the only thing that matters: actual weakness--loss of ability. When you can't physically lift your foot or your hand.

If I thought for a second that you might have ALS, I'd say welcome to this site. But instead, I need to say you need to get off this site and stop trying to make yourself have a terminal disease.
 
Hi Gil, I know ALS doesn't clear up - I was doing much better until the twitching in my left foot started. I'm less concerned about my "old" symptoms, but the twitching has put me over the edge. I understand it's premature and possibly irrational, but it is what it is.

Atsugi, I appreciate your comment, and I know I'm jumping to conclusions. I also know people like me without a diagnosis must frustrate the hell out of people that are going through this for real or are caring for someone with it.

I knew I should have waited until after my Tuesday neuro appt to post, but I got ahead of myself - sorry.
 
Let us know the results of your EMG and diagnosis.
 
"I'm less concerned about my "old" symptoms, but the twitching has put me over the edge."

Okay, so really all you're left with is the twitching. Well, twitching is usually caused by to much caffeine, fatigue, anxiety (which you have in spades) or many other common causes. It is rarely cause by a very, very rare disease like ALS. Of course, telling you to stop stressing out because you're giving yourself symptoms will only add to your stress, so just try to stay busy with other things to stay occupied until you have an EMG and a neuro tells you you'don't have an MND.
 
Hi Folks,

Thanks again for your replies. My neuro appt at the ALS clinic is tomorrow, and I have an additional question:

- I've had nonstop "twitching" in my left foot for over a week and a half. They're starting to slowly fire in other areas as well, but we'll focus on the foot for now. My left foot also *looks* (and feels - right side just feels more "meaty") visually atrophied to me, and so last night I took some comparison measurements and my left foot does in fact measure about 10% smaller in the 3 places I checked circumferance. I don't know if I have "clinical weakness" - I pass my heel/toe home tests but those are probably meaningless.

I assume my neurologist will be knowledgeable, but I like being my own advocate. Are there any other diseases that cause fasciculations plus atrophy (and therefore likely weakness, whether now or soon)? What if they EMG comes back dirty - any other possibilities besides ALS?

I'm sorry for the questions; I just want to ensure I'm comfortable that all avenues are pursued.

Thanks,

Jon
 
>My neuro appt at the ALS clinic is tomorrow

very best of luck!
 
Hi folks,

I had my EMG today. It was mostly clean with the exception of my left foot, where she said she saw the fasciculations I was talking about. She said for someone else she may not have even mentioned it, but because I explicitly identified that as my problem area she did say it showed up on the EMG. She was not really concerned about ALS, as everything else looked normal. Obviously anything can happen, but there's no need to follow up unless I have concerns or start to encounter noticeable physical weakness that prevents me from doing things (stairs, tripping, etc). They tested numerous spots on my foot, leg, hand, arm (all left side) and tongue. I'll have a full copy of the EMG mailed to me once they get everything entered into their system, so I don't have the details yet.

Obviously I would have preferred a 100% clean EMG, but I was also pretty confident today would be an unmitigated disaster, so this is good.

My question is what causes denervation/reinnervation if not ALS? She mentioned a pinched nerve or peripheral neuropathy for some of the sensory symptoms, but do those things cause nerve injury that would show up on an EMG? She also said feet take some of the most abuse on the body, which I would believe.

I know the road ahead is focusing on my mental health and anxiety problems. It's going to be hard to push out the doubt (really hard, given that the EMG was not 100%), but I'm focused on doing that. My hope is that within a couple of weeks this twitching will stop, which will really be a sign to me this is not the beginning of ALS.

I don't want to say I'm glad I went through this, but my perspective is so different now, in a good way.

Thanks all,

Jon
 
Fasciculations do not equal denervation/ reinnervation. You said except for the fasciculations it was normal?
But yes other things can cause it included nerve entrapment
Sounds like a good plan to work on the health anxiety and move on.
Good luck and good health
 
>Good luck and good health

Ditto that!
 
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