Erati
New member
- Joined
- Jan 26, 2016
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- MN
- City
- Duluth
Ok, so I've been reading your forums for a bit now not for me but my girlfriend I'm worried about I want to be strong for her but after I decided to Google well brought me here. I was hoping some of you could give me insight as to if I should be worried or not.
My girlfriend is 31 years old and since I've known her has been worried about ALS. 6 years now. Her friend died of it at 33. Anyways I didn't know what ALS was till I googled it 2 weeks ago because she started going to the ER and having wierd things going on and she is saying she's afraid she might have it.
Symptoms in order:
September of 2015 ER visit severe headaches did a spinal tap drs decided to give her antibiotics for uti
October of 2015 ER severe dizziness and weakness in the arm...MRI was performed nothing noted besides sinus inflammation was admitted for observation neuro said no weakness in her right arm
November no er visits but she complained of severe back pain on right side next to spine and still insisted her arm felt weak and said she had like whispers in her head saying she was dying
December 14 2015 ER visit confusion and trouble speaking... Ct scan still sinus issues nothing else alkiline levels in blood slightly above normal no one noticed her speaking funny she says her jaw was tight and tounge felt off
All the rest of December she says she messes up words at times and will get quiet if she feels she messed something up I still don't hear anything different she says she's having twitches all over including mouth lip back arms ....consultant in the spot on her back that hurts by shoulder blade
January... She sees her Dr and neuro...Dr says he doesn't see anything that says ALS and neuro Emg her arms only says no mnd but tennis elbow on one arm....
Still January her arm doesn't feel weak anymore she said but gets wierd feels like shivers on her back that doesn't go away but not shivers just feeling of them and her neck. She says on and off either her tounge feels dry or numbness under her tounge on right side...although recently she says her tounge almost feels normal but still finds it hard to speak...still nothing heard from my end and she talks alot sometimes when cold she says her jaw feels tight and now she's concerned with her cheek and jaw saying it popped now feels tight and I have noticed that cheek seems less poofy then the other which is how I started worrying. When she gets upset over her speaking she says gum helps and or laying on a pillow helps ...her eyes have been watery lately not crying but watery and her fears of her speaking seem to be more at night...she checks her tounge daily and no spasms she can whistle and roll her tounge stick it out ect...she does clench her jaw alot through.last night she woke up worried she couldn't breathe but was breathing fine could of been anxiety though and she hasn't been sleeping much. Oh and she still has nose congestion when she wakes up.
Does any of this sound as though I should be worried?
I've read alot of posts saying limb Emg doesn't detect mouth ALS some say they do.
Also some say others will hear if speaking problems some say they only heard.
How long till one notices speaking issues till others could hear it.
I love her so much and I know I'm just probably adding to the paranoia but I want to be strong for her regardless she's had a horrible life thus far but I'm starting to worry myself. Should I worry? Or try to push different drs?
My girlfriend is 31 years old and since I've known her has been worried about ALS. 6 years now. Her friend died of it at 33. Anyways I didn't know what ALS was till I googled it 2 weeks ago because she started going to the ER and having wierd things going on and she is saying she's afraid she might have it.
Symptoms in order:
September of 2015 ER visit severe headaches did a spinal tap drs decided to give her antibiotics for uti
October of 2015 ER severe dizziness and weakness in the arm...MRI was performed nothing noted besides sinus inflammation was admitted for observation neuro said no weakness in her right arm
November no er visits but she complained of severe back pain on right side next to spine and still insisted her arm felt weak and said she had like whispers in her head saying she was dying
December 14 2015 ER visit confusion and trouble speaking... Ct scan still sinus issues nothing else alkiline levels in blood slightly above normal no one noticed her speaking funny she says her jaw was tight and tounge felt off
All the rest of December she says she messes up words at times and will get quiet if she feels she messed something up I still don't hear anything different she says she's having twitches all over including mouth lip back arms ....consultant in the spot on her back that hurts by shoulder blade
January... She sees her Dr and neuro...Dr says he doesn't see anything that says ALS and neuro Emg her arms only says no mnd but tennis elbow on one arm....
Still January her arm doesn't feel weak anymore she said but gets wierd feels like shivers on her back that doesn't go away but not shivers just feeling of them and her neck. She says on and off either her tounge feels dry or numbness under her tounge on right side...although recently she says her tounge almost feels normal but still finds it hard to speak...still nothing heard from my end and she talks alot sometimes when cold she says her jaw feels tight and now she's concerned with her cheek and jaw saying it popped now feels tight and I have noticed that cheek seems less poofy then the other which is how I started worrying. When she gets upset over her speaking she says gum helps and or laying on a pillow helps ...her eyes have been watery lately not crying but watery and her fears of her speaking seem to be more at night...she checks her tounge daily and no spasms she can whistle and roll her tounge stick it out ect...she does clench her jaw alot through.last night she woke up worried she couldn't breathe but was breathing fine could of been anxiety though and she hasn't been sleeping much. Oh and she still has nose congestion when she wakes up.
Does any of this sound as though I should be worried?
I've read alot of posts saying limb Emg doesn't detect mouth ALS some say they do.
Also some say others will hear if speaking problems some say they only heard.
How long till one notices speaking issues till others could hear it.
I love her so much and I know I'm just probably adding to the paranoia but I want to be strong for her regardless she's had a horrible life thus far but I'm starting to worry myself. Should I worry? Or try to push different drs?