Absolutely scared and convinced

Status
Not open for further replies.

aguilar89

New member
Joined
Feb 20, 2023
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
AR
Before I start, thank you so much for reading.
I'm 33f and I have some terrifying symptoms. Doctors don't take me seriously the second that they see that I have C-PTSD from so much trauma that I've endured. To the point, though:
I have widespread twitching/hard spasms.
Trouble swallowing and one side of my tongue is larger (doctors just say it's an irritation but it's been there for a year, worried about atrophy and have slow rolling twitches on smaller side)
I feel like I slur my words (but everyone says I sound fine)
My neck is stiff and arms feel weak. I can literally feel my muscles tightening as it happens. My arms give out fast.
Sometimes my left leg feels heavy and like I'm dragging it but my husband says it isn't dragging.
My beautiful aunt was diagnosed with ALS 7 years ago. I feel awful for even being here asking this question, but I have 4 kids and terrified of leaving them as they're all young. I just want answers but the two PCPs around here that I have seen both won't give me a neurology referral as they say they don't see the need and everything is anxiety.
It's just hard to chalk it up to that. Especially when it's symptoms you can see like my tongue and the twitches.

Could this very well be ALS? I am currently in therapy for anxiety and PTSD and about to start medication..but I just wanted to know if these are usual ALS symptoms.
 
I am very sorry about your aunt. Please let her know about the forum if you would like.

You don't need a neurology referral to see a neurologist, which is clearly important to you. Even if you are in an HMO, you can pay cash or do a telehealth appointment, which is generally less expensive.

What you describe does not sound like ALS onset at all. You also acknowledge that other people do not hear the slurring that you do and that your husband does not see your leg dragging as you do. These are cues that your mind is playing tricks, as is very common. Your mind can make your body feel any number of things, and I am sure you are upset about your aunt's condition. Hopefully the therapy and medication will help, but there may be some trial and error in getting it right.

But everything you talk about is common in anxiety and not getting enough sleep. Once you have reduced the anxiety and hopefully improved your sleep, you will be able to parse what physical issues, if any, need to be addressed.

It is a process, but it will help you and those you help, for the rest of your life.

Best,
Laurie
 
I sent my aunt the link to join. She was diagnosed 7 years ago and has lost her speech, so connecting with others may help her feel less isolated. We do what we can to keep her busy, but we don't really know what she is going through. Thank you for extending the invite to her.
I feel like I'm losing my mind. I feel all these things and doctors look at me like I'm a hypochondriac..which isn't entirely wrong, but still..I just want answers. I currently don't have the money to see a neurologist, but it's on my list of things to save up for. Sometimes I tell myself that I know it isn't, but then what I feel flares up and I'm so sure I do. I know everyone on here has better ways to spend their time than consoling someone whose anxiety might really be out of control.
I do appreciate the time and response and will have my aunt join.
 
I'm so sorry about your aunt.

I would like to reassure you that no matter how terrifying you are finding the things happening, they truly don't point to ALS at all.

All the very best, PTSD is very real and I hope you receive treatment that can help.
 
Status
Not open for further replies.
Back
Top