Old 05-16-2018, 08:04 PM #1 (permalink)
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Default Very worried

Hi all,

First of all I would like to say sorry for posting this in here. Just donít have many people to talk to and would like some helpful information.

I am a 21 year old female. My mother was diagnosed with ALS in 2013 she was 52 years old. I was mums primary caregiver. It all started in her foot, then her arms and finally her voice and lungs started to fail. Mum lived about 2.5 years with the disease. We both stayed extremely hopeful and throughout mums journey we adapted and she still enjoyed her life to the fullest.

There is no other family history of the disease as I know of. However the last month I had been experiencing some strange symptoms.

All started with some perceived weakness in my left hand and arm however I can still lift the same amount everything just feels heavier in my left hand. I feel like my arm gets quite fatigued after little use and I can feel a burning sensation. About a week later I experienced a tight feeling in my calf followed by occasional muscle twitches in that area.

I went to the doctor about 2 weeks ago he did all the strength tests etc. but when he tested my reflexes my right leg kept kicking out way further than my left. He said at the present moment i donít have any clear symptoms.

2 weeks on and Iím still experiencing these symptoms. I do have anxiety not sure if it could all be in my head. Iím torn on whether to get a second opinion. I asked the doctor a lot of questions about my likelihood of getting it he didnít seem to have a lot of knowledge regarding the disease.

Iím very scared and lacking the knowledge with the hereditary side of things.

Does this sound like als?
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Old 05-16-2018, 08:18 PM #2 (permalink)
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Default Re: Very worried

Been experiencing this all within a month.
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Old 05-16-2018, 08:20 PM #3 (permalink)
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Default Re: Very worried

No, it doesn't sound like ALS.

If you believe your doctor isn't informed, request a referral to a Neurologist.
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Old 05-16-2018, 08:23 PM #4 (permalink)
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Default Re: Very worried

It does not sound like ALS. We donít get concerned about the possibility of ALS until a muscle group actually fails, e.g. inability to stand on toes or heels, inability to turn a key or fasten a button, etc. Perceived weakness is not the same as muscle function failure. I would not worry about the reflexes either.

Iím sorry for the loss of your mom. And that you had to go through that journey with her when you were a teenager.

Itís understandable that you would be considering ALS with perceived weakness. Know that ALS is extremely rare, and without other family history, your odds of getting it are extremely low. It your mom hadnít had it, it probably wouldnít even be on your radar with your current symptoms.
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Old 05-16-2018, 11:33 PM #5 (permalink)
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Default Re: Very worried

Thank you both for your responses and for the reassurance.

I guess with mnd symptoms are less subtle.
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Old 05-17-2018, 04:26 PM #6 (permalink)
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Default Re: Very worried

Quote:
Originally Posted by SarahKatherine View Post
I guess with mnd symptoms are less subtle.
You'd then guess wrong.

But they are different.
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Old 05-20-2018, 05:00 AM #7 (permalink)
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Default Re: Very worried

The past few days the I’ve had twitching in my right calf in the exact same spot, almost constantly when I relax my leg. I can actually see it. Not sure if stress has brought this on.

Maybe a referral to a neurologist isn’t such a bad idea. Even just to put my mind at ease maybe...
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Old 05-20-2018, 06:31 PM #8 (permalink)
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Default Re: Very worried

Twitching means squat. Zero. Nada.

Normal people twitch, sometimes a lot.

Please don't post about Twitching again...
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Old 05-21-2018, 08:44 AM #9 (permalink)
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Default Re: Very worried

Sarah, everything you wrote said "not ALS." Everything.

I was about to break down your post and put your symptoms into two columns" "could be ALS" and "points away from ALS." But I never found a single word that pointed toward ALS.

Most doctors don't know much about ALS. But we do. Forget it.

If I were you, I'd find a really smart GP and see which direction they want to go.
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Old 05-23-2018, 06:28 PM #10 (permalink)
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Default Re: Very worried

Thanks for your reply.

I understand, I think stress may be bringing a lot of these symptoms on.

I went to a different doctors a couple of days ago. When she tested my reflexes my left hand was completely unresponsive, is this a good or bad sign?

I have been taking multi vitamins for the twitching in my calf it has stopped, which is a good sign. However right bicep has started now.

My doctor has referred me to a neurologist to do a nerve conduction test. Hopefully all goes well.

Thank you again for taking time out to respond to me, you are all very kind people.
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Old 05-23-2018, 08:12 PM #11 (permalink)
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Default Re: Very worried

As it was apparently unclear in my previous post, I'll try again:

Twitching means squat, nada, zip, goose egg, nothing.

Don't tell us about twitching as it's a blatant waste of our time.
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Old 05-23-2018, 08:31 PM #12 (permalink)
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Default Re: Very worried

Just explaining my symptoms.

I won’t mention it again.
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Old 05-23-2018, 10:44 PM #13 (permalink)
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Default Re: Very worried

Excellent .

Please update after your nerve conduction test!
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Old 05-30-2018, 02:57 AM #14 (permalink)
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Default Re: Very worried

Went to the neurologist today.

He performed a nerve conduction test and an emg. On my legs and arms.

It was all clean. He said no signs of als.

Once again thank you all for the advice and reassurance. Wishing you all the best xx
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Old 05-30-2018, 03:50 AM #15 (permalink)
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Yeahhh im so happy for u.
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