Robert21
New member
- Joined
- May 17, 2018
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- Nevada
- City
- Las Vegas
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.
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: