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SyntheticHappiness

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Aug 23, 2017
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Learn about ALS
Country
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Victoria
Hello,

My name is Sura and I recently turned 21 and I believe I have been getting symptoms of ALS. I will explain what I have experienced so far.

July 14 to July 20
I started getting twitches all over my body, Mainly just my legs. I counted roughly 10 - 15 twitches per day. Most of them were very quick lasting roughly 4-5 twitches (2-3 seconds).

July 21 to July 22
I went to see a doctor about it. He requested a full blood test. He also noticed my resting heart rate was at 120bpm and also requested I wear a 24 Holter Monitor. Twitches continued and they spread to my eyelids and my neck.

July 23 - July 30
I decided to magnesium tablets thinking I had a magnesium deficiency but it did not help too much, my twitching only reduced by a very little about.

I got my blood results back. It said I have vitamin D deficiency (10 ng/mL). Doctor said take magnesium if muscles keep on twitching although the test did not say I had a deficiency.

Doctor ordered me to take a medicine called Noten to reduce my heart rate.

August 1 - August 14
Symptoms have somewhat changed, Twitching dropped down to 2-4 per day. Mostly in the morning and before I go to sleep.
New symptoms did develop. My Left hand goes completely numb during sleep. It caused me a lot of stress and fear as I woke up many times without being able to move my hand/arm at all. My legs felt like they were constantly buzzing too.

August 15 - August 24.
About 1 week ago, I developed a feeling of a lump being in my throat and me chocking on my spit 1-2 times per day (I do not choke on food or water, I feel like this maybe related to BFS Globus symptoms). I also have been feeling like I'm losing my voice as I cannot hit as high notes as I was able to before. I also noticed that I have a large amount of phlegm in my throat (unrealted to ALS). Twitching is almost completely gone, I twitch about 3-5 times a day but they are usually about 1-2 pulses lasting a second tops. (almost like a spasm). My left hand is feeling somewhat weak (I'm a typist, so I can tell when I'm performing poorly), My hands shake from time to time and I sometimes (once or twice a day) will mess up a word like its a tongue twister.

At this stage I don't know what to do, I went to the doctor about 3 times over the last couple of months and they say it's anxiety when I never felt symptoms like this before. It's at a stage where the stress is starting to affect my work.

Can anyone give me any advice or insight.
 

KarenNWendyn

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Jul 29, 2017
Messages
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Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
This does not sound like ALS to me. Shaking, buzzing, and numbness are not signs of ALS. My advice would be for you to work with your doctor to get your vitamin D level up to normal range and also to manage your anxiety.
 

SyntheticHappiness

New member
Joined
Aug 23, 2017
Messages
8
Reason
Learn about ALS
Country
Aus
State
Victoria
Thanks you karen. I talked to my doctor and started with 1000UI Vitamin D. I hope all this was caused by a Vit D Deficiency
 

SyntheticHappiness

New member
Joined
Aug 23, 2017
Messages
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Reason
Learn about ALS
Country
Aus
State
Victoria
Extremely Worried Upated

Hello!

Here is an updated along with a couple of questions.

My muscle twitching seems to be fading away as however I have developed trouble swallowing my spit, It feels like i have to manually swallow my spit and I wake up with a very dry mouth every morning. I also noticed that I'm out of breath and have to manually take deep breaths to stop it for a little while. Could this be symptoms of Bulbar Onset?
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,149
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Mod note: merged threads. Sura, please keep posting on your original thread.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,365
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
It doesn't sound like bulbar, no. And non Familial ALS of any kind is exceedingly rare at 21. Bulbar is even more so as it is more common in older patients. You don't describe ALS symptoms but you are displaying a common pattern found in our worried questioners- starting with limb symptoms, finding out they are not indicative of ALS and then starting to worry about bulbar.

As Karen advised work on your vitamin D manage any anxiety and follow up with your gp.
 
Last edited:

KarenNWendyn

Forum Supporter
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Joined
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PALS
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Dry mouth, rapid breathing, and fast heart rate are also consistent with anxiety, which is far more common than ALS. Vitamin D deficiency can also be associated with depressed mood.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,508
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
SyntheticHappiness...

If your happiness comes synthetically... that explains a lot of your symptoms.

Anxiety most likely triggered your heart tachycardia. Your following symptoms pretty much fit the side effects of the Noten you are taking.
 
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