Old 02-16-2017, 06:22 PM #1 (permalink)
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Unhappy Als as a 23 y/o female?

I really need someone who has personal experience to calm me down a bit. The worry is starting to ruin my life.
Let me first say a few things.
1. I totally understand that many of you are struggling on a level that I can't possibly understand. Trust me when I say I'm not here to stalk the boards and hover when I know there are people with more serious worries here. So hopefully my question isn't bothersome and I can ask it and move forward.
2. I read the sticky notes, I'm still just a bit hazy on if my symptoms match or not.
3. I have never been fearful of my health. In fact I've always been the person to ignore things until I absolutely needed medical attention.
4. I am a 23 year old female.
5. All areas that twitch also feel weak to me

Okay so here is my story in short. About 3 months ago I started getting super freaking lethargic and weak. My hands really felt like they had been sucked dry of energy and opening cans and such felt extremely tiring to me. The overall weakness (but extreme weakness in my hands) plus the shaking in my hands that soon developed after the weakness made me go to a neurologist.

This neurologist who didn't tell me much while he was doing things during my visit, did do some tests I think. He checked my reflexes which were fine. He asked me to push on his hands in different ways and since he said nothing afterwards I assumed it was okay. Because I did have visible shaking in my hands he did order a brain MRI.

The brain MRI came back normal and he suggested seeing an endocrinologist since i also hadn't had my period recently and thought it could be a hormone issue. I recently did that. And I get my blood work back Monday but in the mean time Im still freaking out because NOW

My mouth, arms, areas in my foot and even the muscle around my collar bone twitches. When the twitches happen it's usually in the same spot and will twitch for a few seconds.. stop..And return a minute later, and then just cycle through that for a while.

I also noticed while my tongue is at rest it pulses or twitches almost in a jumping manner. I also have a slight cough ive had for the last few months that comes and goes. Chest is also a little tighter.
So to sum it up
  • Head to toe shaking (so bad its ruining my sleep)
  • Tremor in hands
  • Twitching in arms, calves, mouth, tongue (usually it twitches, pauses than twitches and pauses than will, stop for a while and repeats...Maybe in the same area maybe in another extremity)
  • I also feel like swallowing is a task. Like I have to double swallow just to make it happen and consume food. I'll just be eating, having a good time with friends and I feel like I'm chocking because when ive tried to swallow it hasn't gone down and I have to drink something to make it happen.
  • Also slight flattening in one hand.
  • Bit of a coming and going cough/ chest tightness.

Should I worry about ALS? Does anyone think this could be anything else? Should I try another neurologist? Any information would be SO appreciated. I'm currently doing my internship (needed for graduation) at child trauma center and my worry plus the annoyance and fatigue of the symptoms is really starting to interfere with my ability to work. Thank you!

Last edited by jessieandfriends : 02-16-2017 at 07:15 PM
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Old 02-16-2017, 09:05 PM #2 (permalink)
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Default Re: This is ruining my life.

Sounds like your doctors have done good jobs. As I read your post, you didn't say anything that would lead to ALS. In fact, the more you wrote, the more you convinced me that you do NOT have ALS. There are a lot of technical reasons for this. Just about everything you wrote, you thought it might be a sign of ALS, but in fact, it wasn't.

Sorry you're fatigued at this point in your education, you need to be at the top of your game. I'll explain just a few of the reasons you don't have ALS:

First, you're 23. If a 23-year-old had ALS, it would really be big news. This disease is for 60-year-olds, and maybe 40-year-olds. Although I've been told there are some who are younger, I've never seen people this young in any lists of people with ALS.

Second, you said that suddenly you were fatigued and both your hands weakened. Let me describe a tiny bit about how ALS works. In the brain, ALS destroys the nerves that send the 'go' signal to the muscles. This destruction goes in serial order, from nerve to nerve, that affect this muscle and then that muscle. Not all at once. Not both sides at once. So the first thing, usually, is that a muscle in your hand (or foot) will not "go." It does not feel weak, does not feel funny, and because the muscle isn't going anywhere, it doesn't get tired. It just doesn't go.

Twitches: Many conditions have twitching. Twitching doesn't help to diagnose ALS; they could be anything.
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Old 02-17-2017, 12:12 AM #3 (permalink)
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Smile Re: This is ruining my life.

Thank you very much! When I was browsing the other posts looking for answers before asking i actually saw you answer quite a few and you were always so kind and helpful, so I wanted to point that out. Thanks again for easing my mind. I'm paying for college myself and live alone and these doctor visits trying to figure out what's wrong are just starting to put a strain on me financially so I really wanted to get advice from people who had some idea of this, without having to make another trip to the neurologist.

You're response has made me feel a lot better, so thank you very much!

Last edited by jessieandfriends : 02-17-2017 at 12:32 AM
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