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skydog

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Hi
First post here. I'm a 31 year old male; physically active (typically run/bike/workout 4 times a week; compete in road races, etc.). I'm engaged to be married in several months to my best friend and woman of my dreams. I'm also planning to relocate to a new city in connection wiith a promotion at work. I've got a lot going on and am so excited about the future but as I write I find myself in the throes of a claustrophobic and suffocating panic arising from experiencing ALS like symptoms for the past two weeks. I've told no one about them and I don't think I've ever felt so low or alone - like I'm carrying a timebomb that will destroy hopes and dreams- mine, my fiancees, our parents, our friends. I'm no hypochondriac either; I dont even have a general practioner as I'm rarely sick other than the flu or cold. (Spent the day tying a GP down so I can begin the process of figuring out what the hell is wrong with me...) My symptoms are to the point I can't dismiss this anymore....

Note that my second cousin suffers from this disease as well; he was also diagnosed in early 30s (suggestive of FALS?), 7 years ago. He is still alive today; we e-mail although he has no physical mobility. I admire him greatly - his intellect, will to survive, sense of humor in the face of despair - but at this point I am filled with panic at having to live as he has learned to live.

My symptoms have unfolded rapidly - three weeks ago I felt terrific. I never dreamed I could be writing this email. But ALS was always in the corner of my mind - whenever my hands ached from playing guitar or typing or driving I'd have a brief shudder before brushing it from my mind and the symptoms would pass. BUT - Two weeks ago I grew anxious about a recurring tightness in my left leg - I'd stretch the leg all day but the tightness would return. The left leg continued to nag me, and now it tingles as if I can feel the nerve vibrating from my butt to my foot. Then, one day after riding my bike for an extended period of time (it was during the democrat convention) I had a hard time grabbing my car keys. I then began spending alot of time on the internet reading about ALS. A few days after that I experienced my first muscle fascillations - once- in the left knee. It went away but now has come back and how! Left leg, right leg, left bicep, left forearm, right bicep. The fascillations have for the past five nights woken me from sleep and kept me awake till dawn. They dissapate during the day. I've also felt a tightness around my throat. In short, I am at my wit's end as I am really beginning to think something maybe seriously wrong with me.

Apologies for this long winded vent; but it's made me feel a little better.

Do ALS symptoms seemingly explode out of nowhere like mine have - at least in ya'lls experience? My grip and manual dexterity haven't noticeably been impacted and I was able to run three miles last night although I am dragging today and can't imagine running anywhere.

Finally, I've spent alot of time at work today on this website. I am profoundly grateful for the warm and life-affirming responses I've read - particularly Grampa and Wright.

Any thoughts or ideas much appreciated.

Thanks

Skydog
 

sdsyd

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Hi Skydog.

First of all- remember that deep breath you took in awhile back? EXHALE if you can.

As impossible as it may be, try, try to remain strong emotionally and know that MANY MANY other things can cause neuro symptoms. You will never know what is causing them until you start searching for answers, but the internet- though informative CANNOT take the place of a medical Dr. or neurologist. I would recommend calling a local Dr. and getting in right away, and also letting your fiance or another close family friend/relative in on your concerns.

Keeps us posted and I am sure there will be more replies that will be helpful. This is a great place to come- because sometimes you need someone to validate your problems and other times what you need is someone to say " CALM DOWN!"

So to sum it up and I am saying both- try to stay calm, but get in to a Dr. as they are the only ones who can evaluate your symptoms and bring you closer to finding out the cause.

There are many very caring and courageous people on this forum. Please let us know what you find out from the Dr.
 

suzannj

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Hi Skydog,
It's good you're here, as stated by many others the folks on this forum are extremely informative and supportive. Obviously it's bad you're here because you're scared to death.

I'm not replying because I have any major insites to share, more just to tell you I can relate, and have had more than one looooong night twitching (they do seem to be more noticable at night.....I think because of not being busy doing anything else and not moving around as much) and more than one day and night crying, anxiety ridden....and scared to death.

The only other advice of sorts I have? This is a long wait. As you may have read, ALS it not diagnosed by a simple blood test, but of many, many tests. And if you're like me.....you'll God-willing get an "all clear" and STILL be terrified because of all of your symptoms. I agree 100% with Sdsyd. try, try, try and calm down, and get into a neurologist, or hopefully als specialist. They're the only ones who can really help. I also found that when I was trying to keep this a secret, it was much worse. Once I shared my fears with my husband, sister and a few of my closest friends, (and started coming here) I felt relief. Harboring such a great anxiety is terrible. Let it out and those who love you will support you no matter what.

Try and have a peaceful night, I hope you are okay -
Suzann
 

wright

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Hey Skydog

Your ultimate question is whether or not you can go completely asymptomatic to symptomatic in a matter of three weeks. The answer is no . . . unless you were completely unaware of your body prior to your symptoms. From what I can see, you are very aware of your body, given that you work-out so often.

In my opinion, you might have a radiculopathy, tightness in your glutes (which can cause all kinds of problems distally), tightness in your hamstrings, a low back problem, etc. The problems with your hands after a long bike ride: do I really need to explain that one to you? Your fasics? I bet you have always had them and now you're noticing them because of your panic.

What you should do is go see your GP and tell him/her your symptoms . . . let him/her tell you what he/she thinks . . . and then tell him/her your concerns. If you aren't satisfied with his/her diagnosis, then he/she will more than likely refer you to a neuro if you ask.

What you should not do is self-diagnose yourself. Stay off of the internet because it is sooooooooooooooooooo full of incomplete information, bad information, misinformation, etc. and you are going to start putting dots together that don't belong together.

Go relax and let your docs do their thing and they will figure it out for you. Again I wouldn't be worrying about ALS.

P.S. Your second cousin having ALS does not put you at risk at developing it.
 

skydog

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Sep 9, 2008
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Florida
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Wright,suzannij and sdsyd:

Many thanks for the kind words, advice and empathy. Despite taking a sleeping pill last night (which I sneaked from my parent's medicine cabinet on Sunday) I woke up at 2am to twitches, lied awake waiting for and duly noting the next twitch (left forearm, right calf, etc) and didnt fall sleep again the rest of the night. This is a habit now. I'm at work, discombublated, scatterbrained and - of course - back on the internet although I'll refrain from using the internet for further self-diagnosis after I finish this post. My pea brain didnt go to med school after all....

The advice to exhale was useful. I've been suffocating for three weeks now figuratively holding my breath and keeping everything inside. Doing little secret strength tests like jumping up stairs on one foot, dropping to the floor and doing pushups every time I'm alone and going breathless with panic at any perceived weakness. (I promise I'm not a meathead but re-reading this it sounds like I may be crazy!) Guess I should speak to a friend or family member about this but this board has been a great relief and I genuinely am grateful that it (and its users) exists.

I'll choose to believe Wright's point that my second cousin's ALS does not put me at risk for getting ALS though we share one set of great grandparents. That fact is the linchpin of my self-diagnosis; if I didn't know and interact with my second cousin, I probably wouldnt have fixated on ALS as the cause of these twitches and the recently perceived weakness in my left leg. Thankfully neither of my parents has ALS and my grandparents and great grandparents died from other causes.

Again, thanks - I'll be reminding myself to exhale all day. Now, hopefully the darn GP will call me back....
 
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