Old 12-04-2016, 09:21 AM #1 (permalink)
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Default Confused.

I've read the sticky and still have some questions.

Recently we had someone close to use pass away from this horrible disease, she was not a family member but a family friend.

I myself have been battling an illness for awhile now but had convinced myself it wasn't ALS due to the pain I was feeling. One of my questions is that when our friend was sick she often screamed out in pain.

Does ALS actually hurt?

My symptoms are strange. (i don't have a nuerology appointment until February). Started in my right foot over the summer, it started to spasm. It wasn't a painful spasm just an annoying twitch. Then it started to progress to my right hand, and now I twitch all over my body but my right hand a foot and hard to use, ache, they are stiff and "feel" weak.

If anything it would be the spasms that make me fear that I may have this disease. I'm 29. Any advice?

Thank you all for your time.
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Old 12-04-2016, 12:39 PM #2 (permalink)
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Default Re: Confused.

Sorry about the loss of your friend.

There is a post at the top of this forum section titled READ BEFORE POSTING. Go give that a read once again as it is our official position.

There is a huge difference between late stage ALS and onset of symptoms.
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Old 12-04-2016, 05:55 PM #3 (permalink)
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Default Re: Confused.

I'm unsure if I'm understanding correctly. The weakness comes before the muscle spams? The pain is late stages?
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Old 12-04-2016, 06:01 PM #4 (permalink)
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Default Re: Confused.

Usually weakness ( clinical weakness) is first. It is very rare to twitch first and if you do weakness generally comes very soon after.

Pain from ALS is generally from immobility issues and/ or from extreme weakness with the muscles no longer supporting the joints and other body parts
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Old 12-04-2016, 06:02 PM #5 (permalink)
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Default Re: Confused.

The lack of mobility in ALS is what hurts, not ALS itself. ALS doesn't make you "feel weak," you just are, such that others can see.

Sorry for the loss of your friend, but happy that you yourself are not describing ALS. I would pursue next steps with your internist.

Best,
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Old 12-04-2016, 08:43 PM #6 (permalink)
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Default Re: Confused.

Thank you everyone.

One last thing. Correct me if I'm wrong.

From my understanding,

As long as spams are present it will show on EMG if there is nerve damage? I mean damage comes before spasms in this disease right?


I read that it doesn't matter if spams are present during the test that the nerve damage will still show?
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Old 12-04-2016, 08:59 PM #7 (permalink)
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Default Re: Confused.

EMG does not actually tests nerves, it tests muscle responses and actions. Nerve conduction studies, usually done at the same time tests nerve response.In ALS, the EMG is abnormal (Chronic and active denervation in at least three muscle groups, often with short wave abnormalities). The NCS however is most often normal as ALS is a disease of of the brain/muscles, not the nerves.
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Old 12-04-2016, 11:11 PM #8 (permalink)
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Default Re: Confused.

Lenore, I believe you mean to say that ALS kills motor neurons directly; it doesn't affect their ability to conduct electricity, as it were, as an abnormal NCS [that tests both sensory and motor nerve cells) would show. For example, in diabetic neuropathy, the NCS will typically show abnormalities because nerves are damaged, not dead.

Yes, Cai, the EMG shows if that death has occurred by showing that not enough nerve cells are controlling the muscles.
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Old 12-05-2016, 03:33 PM #9 (permalink)
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Default Re: Confused.

Yup what Laurie said! Best wishes, I don't think you are describing ALS either.
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Old 12-05-2016, 05:44 PM #10 (permalink)
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Default Re: Confused.

Thank you everyone. That brings some relief.

May be far stretch... But I have little knowledge about any of this. Does anyone know what I should ask the Drs about these spasms?

For example if I use the muscle in my foot, when I relase it then it will begin to twitch. It does it at random too. But I'm having difficulty explaining.
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Old 12-05-2016, 06:28 PM #11 (permalink)
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Default Re: Confused.

If you ever have any issue with explaining, the best thing is to demonstrate in person at a doctor's appointment. Your doctors are experts in narrowing down sources of symptoms. You seem to be doing fine explaining your concerns here, so I don't see any reason why you can't with a doctor.

If it's a matter of not being able to verbalize your concerns to the doctor in person, bring a detailed written list and ask them what the next step is to take with regards to tracking the issues down.

Good luck with the doctor- it would probably be best if you directed any further questions to them.
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Old 12-05-2016, 07:32 PM #12 (permalink)
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Default Re: Confused.

If your spasms only occur every now and then, but are visible maybe it would be a good idea to video what's happening on your phone. So that even if you can't demonstrate the situation in the doctors office you can show them what's happening.

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Old 12-05-2016, 11:41 PM #13 (permalink)
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Default Re: Confused.

Just make sure you explain what is happening, not say I think I have ALS. That way you are letting your doctor do their job and they will follow every path that needs following.
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Old 12-06-2016, 07:36 AM #14 (permalink)
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Default Re: Confused.

I think Tillie makes a good point on not sharing the ALS fears. Seems sharing that is a fast way to get dismissed as a hypochondriac OR get them focused on proving to you just that you don't have ALS OR worst case getting involved in speculating that you may have it. The final bit seems to be a pitfall of some Internists and GP's in particular.

Yup, keep them focused on finding the actual issue and not your fears. Best wishes.

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Old 12-08-2016, 03:35 PM #15 (permalink)
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Default Re: Confused.

Quote:
Originally Posted by ShiftKicker View Post
If you ever have any issue with explaining, the best thing is to demonstrate in person at a doctor's appointment. Your doctors are experts in narrowing down sources of symptoms. You seem to be doing fine explaining your concerns here, so I don't see any reason why you can't with a doctor.

If it's a matter of not being able to verbalize your concerns to the doctor in person, bring a detailed written list and ask them what the next step is to take with regards to tracking the issues down.

Good luck with the doctor- it would probably be best if you directed any further questions to them.
I have a touch of "white coat syndrome" my mind blanks when I get around doctors. Thank you!!
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