Old 09-04-2015, 08:53 PM #1 (permalink)
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Default The reluctant post

Hello everyone,

I want to thank you for reading my post. My mother passed from ALS a few years ago as I am well aware of the personal nature of this devestating, life altering disease.

I am not scared. I am not looking to fuel or extinguish my fears. I am only posting to release my concerns; to say out loud what has not been properly explained by my doctor.

I purchased a pair of sandals in the mall maybe four years ago and no sooner had I purchased them I found my left foot wasn't able to lift the sandal from the toes properly and the sandal would slip off. Only by clubbing my toes downward can I hold the sandal in place. To this day I continue with this minor inconvienence. There appears to be no progression with this issue.

Two years ago I began twitching all over. I requested an EMG and it came out clean. There still is twitching but not as prominent. I have noticed twitching in multiple spots in the same major muscle. Twitching throughout my calf and throughout my tricep.

Last December my right hand lost grip strength for a day. It was textbook ALS weakness. I could barely hold a key and it took all I had to open a lock. I had difficulty with the buttons on my raincoat; trouble with turning bolts and trembling etc. On my way home from work my strength returned in full.

During this time I also noticed only with strain could I open a water bottle with my left hand. This persisted for about a month or so. I wasn't sure if this struggle with water bottles was subjective only because I don't know if I have ever opened water bottles with my left hand before. Only when my strength returned was I sure it was weakness I experienced. I did have another EMG on my left hand. The Doctor zapped me and I rinsed in hot water repeatedly until the abnormal readings were normal. After that visit my left hand has been completely normal.

More recently I have experienced a soreness or weakness just above the left knee that has resulted in a slight limp that lasted a couple days. And again a limp a week later that was short lived.

I know twitching is nothing to worry about. I am also aware ALS is progressive. I ask you to discern my symptoms with an open mind. Again I thank you for your time and I keep you in my prayers.
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Old 09-04-2015, 09:04 PM #2 (permalink)
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Default Re: The reluctant post

Electric, ALS doesn't get better. Weakness from ALS comes from dead muscles, and they just don't come back to life. I'd say you need to work with your doctor to find another cause. I know that's good news!
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Old 09-04-2015, 09:35 PM #3 (permalink)
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Default Re: The reluctant post

Nuts is right. Your statements:
- It was textbook ALS weakness... my strength returned in full.
- slight limp that lasted a couple days...that was short lived.
- After that visit my left hand has been completely normal.
Those are not ALS-like at all. As Nuts points out, ALS doesn't get better.

You see, ALS is really in the brain, not the muscle. In the brain, ALS destroys a motor nerve, so that nerve cannot send a signal to its corresponding muscle. So the muscle doesn't get the signal to move. It is limp, paralyzed. Once a nerve in the brain is destroyed by ALS, it can't repair itself. So the affected muscle never gets better.

The sandals comments:
- wasn't able to lift the sandal from the toes properly and the sandal would slip off.
- To this day I continue with this minor inconvienence.
also are not ALS-like. If you had an ALS symptom 4 years ago, the odds are you'd be dead by now. Certainly there would at least be some progression. So I'm sure the foot problem is not ALS related.

As you probably already know, twitching doesn't mean ALS. Twitches are so common they're not diagnostic of anything. A lot of perfectly healthy people have twitches.

You had two clean EMGs. Clearly, you don't have ALS. The EMG would show ALS before any symptoms appeared.

I won't try to diagnose what your symptoms might be, as I'm not a doctor. But I know ALS fairly well, and you didn't describe it at all.

Since your mother passed from ALS, it's natural to be quite vigilant about it. But really, you don't have to worry. Your odds of getting ALS are the same as anyone in the normal population. It ain't gonna happen.
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Old 09-04-2015, 09:44 PM #4 (permalink)
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Default Re: The reluctant post

I'm sorry your mom died of ALS. I can only imagine the impact that must have had on you. It is certainly understandable that you might think that you, too, could contract ALS. The one thing about ALS is that the symptoms don't just go away after a few days. They continue, they progress quickly or gradually to the point of disability. Try to put your mind at ease. And as "Nuts" wrote above, see your doctor to find another cause.
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Old 09-05-2015, 09:57 AM #5 (permalink)
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Default Re: The reluctant post

Hello again and thank you all for your replies.
Your responses were so quick and kind.
By the way I am only reluctant to post as I am now teamed with
those that live in the melodrama of anxiety realized through false expectations.....

....anyway....

It appears to me there is some disfunction with the my nerves.
They seem to breakdown and repair themselves.
The twitching is just a sign of this issue.

My mom did have ALS. I am a 43 year old male. I am concerned if these are signs of something yet to come. As if the desease that has been dormant for so long in my body is beginning to awaken and my body is actively trying to repair itself. Could it be that the disease has not taken hold yet? Could my nerves stop repairing themselves eventually? Or is this breakdown and healing process not a part of ALS even in the earliest stages?

On the second visit my Neuro did find enough evidence (i.e. hyper reflex in one knee) to order me the gammet of tests. Including blood work, two MRI's, and an EMG he had to hasten as my insurance was running out. The Doctor highly recommended I not lose insurance and was forced to order my EMG ahead of schedule.

If there has been similar experiences out there please let me know. However, I don't believe in coincidence. A different sort of freedom came over me while undergoing tests. A freedom that I was able to let go of my daily anxieties. Not to the extent some of you are forced to let go and I don't mean to undermine that fear. But I was able to focus on the eternal things and my relationship with the Author of all things. I pray this episode in my life encourages my life to be lived more fully.

God Bless,
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Old 09-05-2015, 01:20 PM #6 (permalink)
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Default Re: The reluctant post

Electric,

You've read that some nerves in the Peripheral Nervous System can repair themselves.
But ALS affects the motor nerves of the Central Nervous System, and they CANNOT repair themselves.
ALS affects the Upper Motor Neurons, which are located near the front of the brain. They cannot repair themselves. ALS also affects the ventral horn of the spinal cord. This is also irreversible.

If you have a neurological condition, it’s not ALS.

Plus, your EMGs proved you don’t have ALS.


It's time for you to go elsewhere for your answers. We must focus our time on people who do have ALS.
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Old 09-05-2015, 03:13 PM #7 (permalink)
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Default Re: The reluctant post

I wouldn't normally post now as you have been totally covered by highly knowledgable members.

BUT - your mother passing from ALS does not increase your chances of getting ALS.

ALS is a very rare disease, and only a tiny percent have a genetic variety. One family member is not a genetic case.

You have health anxiety, it's very easy to diagnose and it is a real disease and it can be treated which is great news.

As Mike said, you've been answered so it's time for you to move off from here, we have to give our time to those who do have this disease.

All the best
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