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ScaredArkansan

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Aug 27, 2012
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40
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Learn about ALS
Country
US
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arkansas
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little rock
I've been here in the past, going back almost 4 years now. I won't go into my history because it can be seen by going through my post history and I'm almost certain typing it all out would break some sort of character limit.

Since about the 20th of February I've been having some troubling symptoms. I had gotten well over my fears and was working out really hard for about three weeks. I was spending 20 to 30 minutes a day hitting a heavy bag and doing some light jogging among a few other things. I developed a lingering pain in my left shoulder and chalked it up to over work, so I decided to take a break. After a day or so the pain was between both my shoulder blades and my left knee was having random pains when walking as well as the knee cap feeling a little "slidy" and clicking. I also noticed some twitches around that knee.

I made a mistake and got to googling things and looking back over web forums. Before long I was have large jumping twitches all around my left knee cap. A bit later I noticed some twitches in my right hand between thumb and forefinger, some were big jumpers but there was a spot that just rippled for a few hours which I could see but not feel. It stopped eventually.

Skip forward a bit and I went to the ER this Friday thinking I was having a heart attack, turns out it was likely indigestion or a trapped gas pocket neither of which are new to me. I had a full blown panic attack while there. Now prior to this for a week or so I was noticing some dry throat and just kind of feeling weird in my mouth/throat.

I was relatively ok Saturday. However Sunday we had a round of huge storms which are a manager source of anxiety for me. That night I kept having the worst twitches in my calves, I decided to try and get some sleep. Upon laying down it felt like I had a sharp pain deep in my stomach, I panicked and the next thing I know it felt like there were worms crawling around under my back, my calves were twitching like nuts, etc. I didn't sleep until 5 AM.

Anyway needless to say it's been a rough few days, I've lost my job, and nearly my sanity. Though I have started on a medication.

I'm just so frightened of my symptoms.

* Twitches that I can see but not feel, I've found that both of my calves have been doing this for at least the past two days. I've also noticed this on my right tricep. On my calves at least I still have quite a few that I can feel as well, but the ones I can't feel seem to occur in the same spots.

* My tongue twitches, even at rest I can see it twitching as can my wife and mother. However interestingly my mothers tongue twitches at rest as well and I get mixed signals on whether this actually means anything.

* Twitches in my throat. Really scary sensation that one.

* Transient pains, I will get little flare ups of sharpish or dullish aches and pains. Pains and slight tightness that starts if I move a limb. The odd pinched feeling in my elbows from time to time. I'm afraid these pains are cramps and I'm just not realizing it.

* Random muscle soreness

* My throat feels mucousy and I feel like I need to clear it. My mouth stays dry and cottony as does my throat. I nearly always feel like I have something at the back of my throat or tongue. It feels like food goes down slow. I also feel like I have just a little bit of stuff in my upper chest and when I breath in very deep or exhale hard there is a small sharp pain near my collar bone right under my throat.

* I feel myself catching on words, and feeling like certain sounds are off. Not constantly but some. No one else seems to notice.

* My calves go off nearly constantly.

* My right knee constantly feels stiff as does that leg, and that leg happens to the be sight of a large amount of my twitches. Sometimes when I put weight on it for something as I release the weight it's like it wants to let go a little slowly.

* I have been having tingling sensations in my hands and feet some. Sometimes when I go to sleep my right hand will feel off, get tingling and cold. Earlier today my right felt weird and cold at the foot.

* Been really sweaty the past few days.

* An odd vibrating sensation inside my chest, throat, and hands. When I bend down or exert any muscle it shakes. My hands shake/tremor as well.

* Feels like my left eye is off somehow. When I shift my eyes I swear it seems just a bit off catching up and sometimes it's blurry.

* oh and from time to time one of my knees will sort of "buckle". My mom and grandmother do this as well though.

Honestly the resting tongue twitches and the constant twitches that are seen but not felt are the scariest. As the fact that my right leg has been occasionally doing that thing where it's stiff letting go of weight going back perhaps two months.

I'm really terrified at this point. Truly scared that I have something serious. No one believes me. I went to the doctor about it but we didn't really go into depth and he just put me on some anti-anxiety meds. I have had bouts of stuff like this for nearly 4 years now but I've never been to a neuro and my last clinical was toward the beginning of all this though it was clean.

If someone would be kind enough to talk to me about this I would really appreciate it. The folks here have been so wonderful in the past when I've been at low. I've been having episodes where I notice a "symptom" and break out in a cold sweat and shake and cry.
 
As you have been here before I'm guessing you've seen the sticky. Everything you describe is sensory. ALS is not a sensory neuron disease. The fact you have had symptoms for 4 years is good. If you had this disease you would be in way worse shape than you describe.The fact is your inability to get a handle on your health anxiety which can be as disabling as any physical condition is your biggest problem. Get help with that, you have a long way to go.
Vincent
 
Thank you for taking time to respond. I'm just really frightened at the moment. Another thing I forgot to mention that frightens me is that I was diagnosed with Central Sleep Apnea at 15 thought it was suspected as early as 12 and I read somewhere that it could be associated with ALS. The tongue twitching at rest really scares me, as again it's one I've heard can be a very bad sign. So none of this sounds concerning to anyone?
 
Arkansas, it ALL sounds very disturbing to me. None of it sounds like ALS, though.

As I was reading your post above, I was wondering when you would get to a part where you had ALS, but you never did. It was all about anxiety.

The big question I have is why did you lose your job? Did your anxiety prevent you from fitting in well and doing a good job? If so, then your anxiety cost you your living and that is one really expensive disease. I would spare no effort, spend as much as needed, to get the best treatment for that anxiety.
 
I've been trying my best to convince myself that this is all anxiety, but to be honest I'm really struggling quite badly. The twitches in my calves have settled a good bit, but now my temples twitch if my jaw moves certain ways. I can feel my pulse in my tongue and it still twitches at rest. I constantly feel like I have to swallow twice to get things that aren't soft down. I also feel sometimes like a part of my tongue is dropping from time to time when I speak or I feel like I will slur a bit. It seems like after swallowing I will have a bit of food left over on the back of my tongue as well. I also notice that I seem to have twitches in my elbows that happen in use and can some times be set off by rubbing the area.

I'm scared out of my wits and at wits end. I'm trying to treat the anxiety, I've been on Lexapro for about 10 or 11 days now, and the constant sense of dread I had has just been replaced by a sort of numb fear.
 
A constant sense of dread is, I believe, an actual serious medical problem.
If I were you, I'd quite wasting time on this ALS business, and get to a psychiatrist or a psychologist to get that problem fixed before it takes over your life.
 
Well I have been doing better in general. I'm a few weeks on Lexapro now and seeing a therapist. However one thing today did bother me a bit. While driving I felt this weird sensation in the center and toward the back of my tongue. It was like a pulsing/thumping type thing, I wouldn't really call it painful but there was a sensation of some sort.

Does this sound like a tongue cramp? My family tells me that cramps are typically painful and unmistakable. They also say that they typically last more than a few seconds and require some movement to get better. Does that sound correct?
 
No idea what that is, but it's not anything I ever heard of in ALS.

I think you're describing being hyper aware of your pulse. When the happens to me I call it palpitations and then I wonder what my unconscious mind is afraid of. It's an anxiety thing for me.
 
Scared Arkansan-

Lexapro is an an SSRI antidepressant. This means it affects brain chemistry and nervous system function in a very profound way. It is very common to have physical and sensation side effects for months after starting any type of therapy. Everything from "zaps" and heart arrhythmia to jaw clenching and twitching. Your doctor should know about the side effects so you both can sit down and discuss changing dosage or alternate forms of therapy if you feel it's not helping you, or it's adding to your health burden.

Best wishes
 
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