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redbird

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Hello! I'm a newbie and I've debated posting for awhile and finally... I'm giving in. You all seem super nice so I'm hoping you can help me decipher my symptoms as they're starting to freak me out. :) I can't decide if this is worth going to a doctor about or if it's all in my head. I do suffer from health anxiety so I'm always thinking I have something. This is the first time I've had symptoms that have stuck around though. First off, I have not been diagnosed with ALS or anything. I'm a talker so I'll try to make this as short as I can!

This has been going on for several months now. I'm a 34 year old female, a bit overweight and am quite inactive. I sit at a desk all day and then come home and sit some more. I truly do intent on trying to get active again soon. Anyway, several months ago, probably April-ish, I noticed my legs felt kinda odd. I would get almost a fluttering sensation in them. Kind of like bugs crawling. I attributed it to maybe restless leg or something. A month or so later, I started getting twitches. It almost feels like a constant vibration throughout my legs especially.

Long story short, over the last few months, I've noticed I get twitches in my legs/feet and occasionally in my sides, hands, and arms. I feel something every day, many times throughout the day. I've also had a twitching/spasm in my right shoulder for a couple months and my left eyelid has been twitching off and on (more on than off) for literally a year now.

I have noticed that I definitely feel weaker in my legs. It's hard to describe.. but I just feel less stable and while I don't have trouble getting up or anything, I sometimes feel like I could have trouble.. but then don't. I realize that doesn't make sense lol... It's like my legs feel weak until I use them, then I dont experience weakness when I get up. I don't think there is a loss of strength really, other than the loss of strength from being so inactive, but it's hard to tell. My arms get fatigued much easier now and feel heavy often. I notice that when drying my hair, I have to rest more. Or when I'm hanging clothes in the closet, my arms tire from being held up. I think it may be more fatigue than weakness there, so I'm hoping that gives me hope that this isn't ALS or something.

I have been under a lot of stress as my husband was diagnosed with MS in the last 1.5 years, but I've been managing that stress really well. Or so I thought. I feel like I've been to the doctor so much in the last 7 years due to anxiety that I'm hesitant to go yet AGAIN for this unless someone else thinks it's worth looking further into. I've had brain MRI (great), blood work (all perfect), and Xrays (i know that shows nothing in regards to ALS). I have NOT had an EMG yet because I don't know if I should bother getting another expensive (and scary!) test if it sounds like something totally different..

Does any of this sound even remotely like ALS? I feel like I'll be told it's anxiety b/c I do have anxiety, but I've not had issues with it for awhile now so I don't feel like that's it. What do I know though! Thank you so much for taking the time to read this and respond. I really appreciate it <3
 
> I can't decide if this is worth going to a doctor

go to a doctor

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Sorry to have bothered anyone. I did read the sticky note but thought someone could provide further insight as my family has already had one major diagnosis this year and I am fearful of another. I apologize if I bothered anyone. I'll go see a doc and hopefully not bother you again.
 
Also - I hope that didn't come off rude, as I truly didn't mean it that way. I didn't consider how difficult it is for some to reply. I sincerely apologize for posting redundant questions. I wish you all the very best.
 
Redbird, sweetie, no one here can diagnose you, which you already know if you've been reading posts by other people wondering if they have ALS. It sounds like your plate is pretty full, so anxiety is certainly a possibility. Inactivity and the demands of caretaking can, as you know, take their own toll.

As you also already know, you have two choices: see the doctor again, or don't, and wait to see what else happens. If you chose to wait, I suggest you get active and see what that does for you. A daily walk would be a good start. I haven't taken mine in two weeks and am already paying a price.

In the meantime, the folks here have very little energy and time is very precious to them. They are nice people, but they or their loved ones have what is probably the most awful disease you can imagine, and they need to hold each other's hands. If you go back to the doctor and learn that you have ALS, come back and join us. Then, and only then, will this be the right place for you.

Best of luck to you...
 
Thanks, Nuts. I only came here because according to the forum description, this was the place to ask questions and for people who were concerned. I must have misunderstood what this specific forum was. I know no one but a doctor can diagnose and I definitely wasn't looking for that. I was just looking for some input from someone wiser. Again, I'm very sorry.
 
Redbird, I will pray for you, go to the doctor to ease your mind but I don't think that you have this horrible disease.

Janie
 
>go to the doctor to ease your mind but I don't think that you have this horrible disease.


with the odds of 1:50000-1:75000 that you will win the ALS lottery, I would bet on anything else.

I do like cardinals, tho ...
 
How did we get so lucky Max? I know it's a question that can't be answered. IIWII
 
>How did we get so lucky Max? I know it's a question that can't be answered. IIWII

:) IIWII ("It Is What It Is!") ...
 
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