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nathan1

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Joined
Feb 19, 2016
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Reason
Learn about ALS
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00/0000
Country
AU
State
WA
City
Perth
Hi everyone, I am new to here. I find it is a very supportive community here. I have been reading the posts seeking for help since my problems started. This is my first post. I am a 33 male.

From October 2015, I started gym exercises. Before that, I ran about 2-3 times a week and 4-5km each time. In September I also did my first 12km run and generally it was not so hard for me due to my routine running. Two months since I started going to the gym, I started to have muscle soreness, particularly in my two calves. Then, half week later, muscle twitches started to occur in my two calves. These muscle twitches were intense, 24/7, and affected my sleep. The twitched quickly spread to the other parts including abdomen, shoulders, upper back, forearms, and occasionally tough.

About 1.5 weeks after the commencement of the twitch, I started to have moderate to strong muscle stiffness, which affected mainly my right calf and occasionally left forearm and hand. The stiffness somewhat affected my walking, and I felt my right leg was a bit shaky and weak when standing a bit long like cooking.

Three weeks after the initial twitches, the twitches noticeably reduced in both frequency and intensity. What I mainly felt at that time is vibration, particularly occurred in the morning when I started to wake up. At the same time, muscle stiffness on my right leg was my main concern.

Four weeks after the initial twitches, I went to see a neurologist for EMG and NCV (nerve conduction velocity) tests. I was told that the results were negative/clear. The neurologist said this might be muscle problems, because he did not think anything wrong with the central neural system.

One week after my visit to the neurologist, I started to have new problems. I started to feel shortness of breath. This occurred on and off and lasted for an increasing amount of time with no clear triggers. But, after a week or so, the feeling of shortness of breath was completely gone.

Two weeks after the visit to the neurologist, I went back to the gym and did some push-up. I only did a small number, as I understand my body may not be happy about the amount I used to engage in. However, two days after the visit back to gym, there were some weakness and stiffness that affected my right hand, fingers, forearm, and shoulder. I thought these problems may disappear quickly. Then, I went out for kayaking the next day. Later that day, my right hand and arm were in great pain. If 1 was the level of pain on my left arm, which is normal, the level of pain on my right arm was 10. Therefore, I was convinced that the stiffness and weakness were real rather than perceived.

The weakness has been constantly on my right arm, hand, and fingers for more than a week now. I would like to describe my weakness in this way.
- Hand back, fingers, and forearm are heavy and stiff constantly.
- Sometimes my hand shakes when I hold a spoon with it, and fingers may shake when I flatten my palm, particularly the ring finger.
- When I use my hand to type or hold a bottle, more arm and shoulder muscles (such as biceps) are involved, as they are moving like shaking.
- When I try to fold/unfold the pink finger, it does not move smoothly - it is locked once in the midway, which becomes more frequently.


In summary of the change of my problems
1. Noticeable reduction of body-wide muscle twitches, which is the initial problem that I can feel is not normal. However, there are still some twitches on my right leg, foot, hand, elbow, shoulder, forearm - my hot spots. Occasionally, twitches occur elsewhere.

2. Muscle stiffness and weakness affects RIGHT leg (calf, ankle, foot back, toes) and arm (fingers, hand back, forearm, shoulder) - This is my main concern at the moment, and stiff leg starts early (now nearly 7 weeks more often than not) and stiff hand and arm occur more recently (now more than 1 week constantly).

Based on the information on MND/ALS that I searched, I have some questions that I would hope to seek your opinions or comments:
1. Muscle twitches can present as an early sign, but my muscle twitches have generally reduced body-wise. Muscle twitches remained at hot spots but not occur most of the day. - Can this happen among people affected by MND?

2. My biggest concern as mentioned above: muscle stiffness on BOTH my arm and leg of the RIGHT side (my dominant side) occur with one month apart. I understand that stiffness can also present initially and may lead to weakness or weakness feeling. However, from what I read, people are affected on ONLY 1 leg or ONLY 1 arm and then progress long time before other limbs are affected. Am I right regarding this?

3. I think right now, what I am experiencing on my right side may be still something called "perceived weakness", because I can still do what I used to be able to do, although it requires more concentration and strength. I assume there are also cases where the initial perceived weakness eventually progresses into real one that affects basic functions. Right?

4. Before my neurological examination, my stiff leg has already been there fore weeks, and actually I had also felt somewhat weakness in my right hand, such as shaking when holding a spoon, but it did not feel as strong as now. I assume there is a very good chance for the neurologist to pick up the underlying issues from the EMG test given the problems had already been present (?) If the EMG result reflected my real situation at that time (clear/negative), what would be the odds for these new worrying symptoms to develop just 3 weeks later?

I am really really sorry for my long post.

Any comments would be greatly appreciated!

THANK YOU FOR YOUR TIME AND ATTENTION!

Nathan
 
Hi Nathan, I have really good news. You described a person who does NOT have ALS.

First, let's be real. A neurologist examined you personally, using an EMG, and declared that the results were clean. It doesn't get any better than that. Could you develop a brain disease--ALS--that affects your whole body just 3 weeks later? No. The EMG will detect denervation of the voluntary motor neurons long before there are any outward symptoms. Could the EMG be completely wrong? I suppose so. But since you don't have any actual weakness, don't sweat it.

The thing called "weakness" in ALS is pretty obvious. A nerve in the brain is destroyed, so it can't send the go signal to its corresponding muscle. So the muscle just lays there, limp and useless, paralyzed. There is no feeling of weakness associated with this. No burning, exhaustion, fatigue, weirdness, whatever. The muscle simply doesn't go, and there's no way to "try harder" or "will it" to go. Since the nerve in the brain is destroyed, that muscle will never get better.

Second, while reading through all your post--thanks for all the good details--I never once worried that this guy might have ALS. All I kept thinking was that this guy is so active he never gives his muscles a rest.

Now, to your specific questions.

1. Twitching can occur, come and go, in ALS, and in other conditions as well. Twitching is so common that it's not really diagnostic of anything in particular. Perfectly healthy people twitch. (I don't have ALS. I am healthy. But I have twitches that occur all over. I think they're amusing. Funny what our bodies do sometimes. I began to twitch in my late twenties, and I'm 60 now. (Holy crap. I'm 60! When did that happen?)

2. Stiffness can occur in ALS. And stiffness occurs in a host of problems, notably when you're under stress or when you take up exercising again. Twitching and stiffness are common to the human condition. ALS is rare. And yes, we would NOT see ALS affecting the whole body at once. ALS moves in a serial fashion, starting in one leg (or maybe one arm) and continues from there. This is because, in the brain, ALS is destroying motor nerves, one by one.

3. You described perceived weakness. I'm sure your neuro tested you for weakness. It's such a quick and easy test that you might not have even noticed it. Can you stand on your toes? Your heals? Walk backward on your heels? Can you button your shirt? Ok, then.

4. The EMG sees the condition of your nerves even before symptoms are apparent, so if you had a clean EMG, you didn't suddenly develop a body-wide devastating terminal disease three weeks later.

All in all, I'd say you're in great shape, ALS-wise. Your stiffness, pain, and perceived weakness might have a very simple cause like diet or vitamins, but I can't rule anything out since I'm not a doctor. I can, however, say with total confidence that you did not describe the onset of ALS in your post.

One more thing: follow up with your GP doctor. They are trained to lead health investigations to whatever specialties might be needed.
 
Hi Mike,

Thanks so so much for your help!

I really appreciate your time and patience in reading my long post and organising a very detailed reply to my questions. I also appreciate your great description of the background information about MND! Actually, I quite enjoyed reading your writing!

I have done nearly comprehensive blood tests including vitamins and thyroid stimulating hormone etc by my GP. All the results were normal. I will follow-up with my GP to let him guide me through the journey whatever it will be, rather than my fear and irrational self-diagnosis.

Thank you again, and I would think that without nearly 60 years of experience, a person would not write something that shows empathy, care, and humour :)


Take care!

Nathan
 
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