Old 05-17-2018, 03:48 PM #1 (permalink)
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Default Think I have ALS and have some questions

So first off, I’m a male of 21yo. I’ve been healthy my whole life up until 2017, I was trying to lose weight from 190 and went down to 115 as of now, I was trying to lose weight but now I can’t seem to keep weight on. So about a month ago I started to develop bad back pain in my lower back, at one point after about 5 days I lost bladder function , it was very hard to hold my pee it just basically came out.

So I went to an Urgent care and they did lots of blood work and CT scans, I was sent to an ER because they thought my appendix was inflamed, so at the ER they did a bunch of more tests and decided nothing was wrong and to just come back if the pain got worse, at the time I was at regular cannabis smoker so I smoked that night and had a coughing fit that sent my back into a pain unimaginable, so I went back to the ER later that night, this time they did an MRI and found really bad inflammation in my lumbar and a few bulging discs in my lower thoracic spine. The doctor prescribed me Meloxicam for 10 days, I took it for 2 because I noticed I was having the side effects that said “stop taking if you experience these.” Which was heavy breathing and bad chest pain. Since then my pain has subsided and I actually felt like I was getting better for a few weeks.

But I noticed about a week ago my muscles are feeling weaker each day, like I’m shaking to hold a fork up and I have to re-adjust my hands holding my phone constantly, and my legs feel like noodles after short walks. Also my symptoms are worse on my right side (I’m left handed) but it’s not that noticeable it’s overall bilateral progressive weakness, also my eyes hurt a little bit.


So just the other day I went back to the ER and again all my blood work and CT scan came out fine, even did a brain ct scan this time. And it puzzled my doctor, he then did some sorta neurological test? Where he had me pull his arms and had me resist him pulling my arms away, and then a leg drop test I think? And he didn’t seem suspicious until he got to my right leg and it was basically a noodle and I couldn’t bend or resist the way he was trying to make it. He instantly said “that’s really weird” and left the room instantly, a little later he came back and said I need to see a neurologist and diagnosed me with Myasthenia Gravis, and my symptoms make sense for that, I’m starting to drool, my eyes hurt a little bit, but no drooping, and my symptoms did not start with my eyes at all, but it’s mainly my hands and arms and legs and feet that feel weaker, nothing really hurts just weakness.


I have to wait awhile to see a neurologist because of my insurance, so most likely a month since I have to be referred to a neurologist by my PCP, even with the ER doctor’s orders, due to insurance reasons. And symptoms just seem to be getting progressively worse each day, I noticed my muscles are more fatigued each day, and now my thumb and ring finger on my right hand are “clumsy.”

Also I should mention I’ve always had bad anxiety and before all of this for the last 3 or so years I’d have these panic attacks that would lead to extreme shakey ness and muscle contractions that would only happen when I spiraled too far thinking of bad stuff, these haven’t happened in awhile, but it was another odd thing about me.

My symptoms now
Back pain if I sit too long or if I try and have good posture too long

Neck weakness or burning after holding my head up for not that long

Extremities feeling weaker each day (no pain though)

Random muscles twitches all over the body

Throat feels more and more weak/ sore each day

Extreme forgetfulness

Really bad tinnitus in right ear randomly

Minor visual issues (double vision sometimes when bright lights or trying to focus on reading)

Randomly cracking? (Like just last night I got out of my friends car and felt like a pop in my pelvis that sorta hurt my right leg, it went away since) but lots of just basic movements cause a lot of popping noises and cracking without trying to make things pop or crack

Poor posture(my back looks kinda odd, I notice my spine shows each indent in the middle of my back (my friends always would comment on it now, saying I look like a dinosaur with the little bumps they would have along their back)

Right shoulder slightly elevated but no pain when adjusting it down, but it’s normal resting is elevated slightlly more than my left side.

When I think of sad things I cry now, (I’ve always been good about holding tears back, but now, so many things seem to just trigger it and I just have uncontrollable meltdowns basically.)

So my questions are for those who have actually been diagnosed

Did your symptoms start with back pain that ended up being spine inflammation?

Did you notice muscle wasting in your hands and feet first?

Was your vision effected? But not extremely? (Like minor sensitivity to light?)

Catch myself drooling rarely but more often then before, did you start noticing drooling?

(I’m really sorry I know this is one of the hardest diseases to live with, and I haven’t been diagnosed yet, but I’m just worried because the timeline for my symptoms seems very off for myasthenia gravis especially since people tend to complain mainly about their eyes first with it, and my eye issues are very minor relative to the muscle weakness and overall continuing fatigue ) I understand no one here can diagnose me over the Internet, I’m just curious of the symptoms people here have and what it started with first, and I am going to see a neurologist ASAP. Also I’m really sorry for the formatting and jumbled mess this is, I’m just scared and want some information and advice from someone who either knows someone officially diagnosed or has been officially diagnosed them self.

Last edited by Robert21 : 05-17-2018 at 04:00 PM
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Old 05-17-2018, 03:56 PM #2 (permalink)
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Default Re: Think I have ALS and have some questions

Can you go back in and edit for sentences and paragraphs? The size of this post makes it very difficult for those with eyegaze to read and need it broken up.

Thanks


It sounds like you've already been given a possible diagnosis of MG. You have a whole host of symptoms that point away from ALS- eyes, sensation, multi-area onset, etc.
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Old 05-17-2018, 04:01 PM #3 (permalink)
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Default Re: Think I have ALS and have some questions

Iím so sorry, did that edit help at all?
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Old 05-17-2018, 04:04 PM #4 (permalink)
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Default Re: Think I have ALS and have some questions

No, Robert. It's a pile of sensory (i.e. "feels like") stuff, and that's not onset ALS.

Please read the Pinned Post / Sticky Post at the top of this forum alluringly titled Read Before Posting.

Your answers are there.
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Old 05-17-2018, 04:07 PM #5 (permalink)
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Default Re: Think I have ALS and have some questions

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Originally Posted by ShiftKicker View Post
Can you go back in and edit for sentences and paragraphs? The size of this post makes it very difficult for those with eyegaze to read and need it broken up.

Thanks


It sounds like you've already been given a possible diagnosis of MG. You have a whole host of symptoms that point away from ALS- eyes, sensation, multi-area onset, etc.
I guess so, it’s I can’t get over the spine inflammation, I thought maybe I could have Ankylosing Spondylitis since my posture and what not seems very off, but I don’t think that would have any impact on progressive muscle weakness in hands and arms as well.

it’s all speculation of course until the neurologist diagnoses me

Just seems weird that I can feel myself getting weaker each day it’s just slightly worse, but I guess a week timeline of muscle weakness isn’t enough to really say anything either.

Sorry again for the poor formatting, I don’t usually use many forums, and was an engineer major and never really was punished for having bad grammar and punctuation :/
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Old 05-17-2018, 04:15 PM #6 (permalink)
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Default Re: Think I have ALS and have some questions

I guess I should have used a different word, I mean I literally am having more and more trouble using things that I didn’t previously have trouble with, also my speech is more slurred or I make more pauses to think of how to say the word out loud that I normally never had trouble doing.
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Old 05-17-2018, 04:16 PM #7 (permalink)
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Default Re: Think I have ALS and have some questions

I highly recommend you stop researching and speculating about ALS. Hard to do, particularly as you confess to anxiety as well. Greg has given you the recommendation to read the "Read Before Posting" thread. If you do, you will see much to reassure you about your reported symptoms.

Please let us know how your next doctor's appointment goes. Til then, you should probably stop researching on an ALS forum for symptoms that can be attributed to a disease you have been told you likely have.
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Old 05-17-2018, 04:29 PM #8 (permalink)
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Default Re: Think I have ALS and have some questions

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I guess so, itís I canít get over the spine inflammation, I thought maybe I could have Ankylosing Spondylitis since my posture and what not seems very off, but I donít think that would have any impact on progressive muscle weakness in hands and arms as well.

itís all speculation of course until the neurologist diagnoses me

Just seems weird that I can feel myself getting weaker each day itís just slightly worse, but I guess a week timeline of muscle weakness isnít enough to really say anything either.

Sorry again for the poor formatting, I donít usually use many forums, and was an engineer major and never really was punished for having bad grammar and punctuation :/
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I highly recommend you stop researching and speculating about ALS. Hard to do, particularly as you confess to anxiety as well. Greg has given you the recommendation to read the "Read Before Posting" thread. If you do, you will see much to reassure you about your reported symptoms.

Please let us know how your next doctor's appointment goes. Til then, you should probably stop researching on an ALS forum for symptoms that can be attributed to a disease you have been told you likely have.
I will keep you a posted on what the neurologist says, I know I should trust doctors but the first one thought my appendix was inflamed and that was not an issue at all, I know Iíd feel a lot better after actually being tested by a neurologist, if a neurologist told me I do not have ALS I will 100% believe them.

Thank you again for the help everyone, and I went back and read the sticky post, and I apologize for that, I see now the muscle isnít weaker or having difficulty, it literally wonít work, I like the WiFi example of it.

As of now I donít have anything about me that completely doesnít work, I guess Iím just scared because things are getting weaker.

Ií also had no idea what anxiety could do to your body physically, Iíll stop researching and just wait until I can get into a neurologist appt.
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