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Gb84

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Hello everyone, my name is Greg. My heart goes out to everyone who has been afflicted with this disease and my thoughts and prayers are with all of you. Also, I want to thank everyone for giving g your time and efforts on posts such as ‘Do I Have Als’ your time and effort is greatly appreciated.

I am 34 years old, male, no history of ALS in my family. I am very active and weight train daily. My symptoms began about a month ago ( that were glaringly obvious) and thinking back there were other things in the past year I will briefly mention.

1. Twitching in mostly my legs but also upper back and shoulders while rest. This began about a month ago and has not quit. You can visibly see the twitches sometimes in my legs.

2. More cramping and muscle soreness. I am getting sore more easily in most muscles, especially calves and quads without expending much exertion. I just started a new workout program but I dropped all of my weights down when I started so not lifting nearly as heavy as I was the past few months.

3. Dull aches and pain in my mid and upper back and sometimes neck. This comes and goes but it it almost daily at different times of day. Not excruciating maybe 3 out of 10.

4. Shortness of breath: I’ve noticed on several occasions in the past 2 weeks I have gotten short of breath while talking to someone while standing or walking. However, I walked the stair master at the gym yesterday for 15 minutes with no hand support and road the stationary bike for 10 minutes and was totally fine. I also do not have trouble breathing laying on my back and no heavy chest.

5. Consistent cough: I have had a cough for 3 months and voice is getting hoarse. I also seem to be stuttering a bit more often when I speak.

6. Fumbly fingers: I noticed yesterday I was having some trouble typing on the computer. My fingers on both hands seem jerky. Sometimes I hit keys too soft and other times I double hit a key. This carried over into today and is really freaking me out because I am a good typist I really have to concentrate hard now not to make any errors ( and I still do even when typing slowly) loss of coordination? As my fingers are quite jerky even when trying to type slow. I also seem to just miss grabbing cabinet drawer handles and other things of that nature more often like a lack of coordination or something.

7. Weakness in right arm: I noticed over the past 2 weeks my right shoulder gets tired much easier like when I comb my hair. Also my right pinky feels really fumbly, odd, and weak compared to the other.

8. Misc: my legs have felt stiff when walking since sometime last year most days. I noticed while sitting on the stationary bike I feel more off balance in my legs and but even while holding on to the handles. I have not run in years. While trying run on a tread mill, I feel extremely off balance. I can jog a light pace but almost trip when I begin to run. I have not fallen, dropped anything, or experienced slurred speech.

9. Medical tests: I have seen my GP. He says this does not sound like ALS but referred me to a neurologist I will see may 14. All blood work normal, brain MRI normal, chest X-ray normal.

Any thoughts are appreciated. Please be gentle, I’m really scared. Thank you for taking the time to read.
 

Nikki J

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Mar 22, 2012
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Hi
1 twitching is common and meaningless without clinical weakness
2 cramps are also common and nonspecific
Muscle soreness is not an early symptom. It happens later in ALS due to immobility
3 pain- see soreness comment
4 not at all like ALS
5 not like ALS unless swallowing very impaired and choking and aspirating
6 jerky and lack of coordination is not weakness. Nor does ALS present bilaterally
7 feeling s not how ALS weakness is. And you weight train but have trouble combing your hair. Really?
8 not like ALS
9 agree with gp. ALS does not cause symptoms in multiple ares at once. It starts in one place and spreads gradually.

Please let us know what the neuro says but I don’t see a reason to fear ALS. Ask what is wrong with me. Don’t ask do I have ALS. Your appointment will be more productive
 

Gb84

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Thank you very much for the detailed and prompt response. I appreciate your time and patience dealing with people in my situation. I will discuss results of the neuro visit after the appointment.
 

Gb84

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I was hoping to get some clarification on a phrase I have seen on the forums mentioned several times. Often times I see this phrase “ ALS comes on insidiously over several months” can someone please clarify what this means? For example, does it mean a small appendage no longer functions than it progresses, or does it mean weakness accumulates causing something to eventually fail completely. Thank you.
 

KarenNWendyn

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Joined
Jul 29, 2017
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PALS
Diagnosis
07/2017
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It means the symptoms often come on subtly and sneakily. The person may not notice initial symptoms or only notice a subtle change in function. This is because there is no “feeling weak”. It’s just that something isn’t working quite right.

Then over time the loss of function gets progressively worse to the point of total failure. I liken the gradual loss of function to turning a dimmer switch. And that dimmer switch goes at different rates for different people, so it may seem more dramatic for those with rapid progression.

Please reread the sticky that says “read before posting “ (below). If you have additional questions, I feel it’s best if you would ask your neurologist.


https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html
 

Gb84

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Thank you for your kind and prompt response. I will take your advice. Take care.
 

Gb84

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Hello, I have about another 2.5 weeks to go too see a neurologist but I have been experiencing extreme fatigue almost daily for the past 2 weeks. My whole body is fatigued for hours a day no matter how much sleep I get. I feel as if my balance is off especially at night when I get up to go to the bathroom. My muscles in both legs and sometimes both arms are extremely tired a lot. I am still working out but my body is taking much longer to recover. Also, I have been getting out of breath more often doing normal activities. I had a chest CT last week that was clean. Any thoughts.?
 

KarenNWendyn

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I recommend checking in with your primary doctor about your concerns. He knows your history and will be in a much better position to address your concerns than random strangers on the internet.
 

Gb84

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Your right, thank you and apologies.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,488
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Gb, as Karen said it best... address your current concerns with your
primary care doctor.

But, you got two things going in your favor you shouldn't be concerned
with ALS.

You wrote....

"My muscles in both legs and sometimes both arms are extremely tired a lot."

*Key word..."sometimes". There is no "sometimes" with ALS

"I am still working out but my body is taking much longer to recover."

*Key word... "recover". There is no "recover" with ALS.

Hope your primary care doctor guides you to a good healthy life.
 

Gb84

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Thank you all for your patience and kind words.
 

lgelb

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Nov 5, 2009
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Lost a loved one
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I don't see any reason for worrying about ALS, but would check back with the GP assuming the neuro exam is negative, to discuss whether you might have GERD, allergies, a sleep disorder or a virus.

You can also do simple things like record your sleep on your phone to see how your breathing is doing. I would also double-check your sleeping surface, esp. if it's older. Many of the issues you mention can be down to lack of refreshing (deeper) sleep.

Best,
Laurie
 
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