Follow up post

[Mhinz]

Hi, I previously posted four years ago about some issues I was having, since then I've got control over my anxiety, the symptoms never went away but I ignored them until now.. I have had swallowing issues for about 4 years, my throat feels weak when I swallow so I've always just took small bites and dealt with it, well my GI doctor ordered an esophageal manometry test and I'm waiting on the results for that. I'm absolutely terrified that it could be ALS causing my swallowing issues. I can still talk fine. My right hand still feels tight and clumsy, my grip strength is around 60 in both hands, which isn't very strong and right leg (calf) muscle gets tight often.. I twitch in my calves and feet 24/7 it literally never stops. My question is, if I've had these symptoms for four years especially the swallowing, would I still be able to talk clearly and do my every day activities if it were ALS? I've never had an EMG, so I've had this fear in the back of my head for years now.

 

[ShiftKicker]

Previous thread here

You're right, 4 years of this, you would be profoundly affected if it were ALS. You would have lost many functions, and it sounds like you have lost none. It would be way wiser to wait for the results of your test before thinking about ALS. There are many other conditions that your doctors may be looking at, so maybe ask them what next steps are and let them guide what direction to look in.

Please take care

 

[Mhinz]

Thank you so much for your advice, you're so right. I apologize for letting my anxiety get the best of me.

 

[ShiftKicker]

Hopefully you'll get some answers next visit. It's not at all a dismissal of your symptoms, only that ALS would not be the concern. It may be a good idea to check in with someone for anxiety support while you wait for information.

 

[Mhinz]

You're absolutely right. I really appreciate you giving me reassurance when you didn't have to. I am actually starting an antidepressant today, I've been on it before but came off (not a good choice, obviously)

 

[affected]

Honestly, 4 years and no ALS symptoms still, please let it go.
I also don't want to sound dismissive, but you report that you can still perform all your daily activities.
Please work with your doctor on this as well as taking an antidepressant.
All the best.

 

[Mhinz]

Thank you.

 

[lgelb]

I'll third that. Coming to grips with your anxiety, which is often from some other issue and then projected onto your health, can prevent you from wasting years of good life and basically crippling your own mind/body.

All the best.

 

[Mhinz]

You're absolutely right. It's just so hard to not think this is what I have going on. I feel like I have a lot of symptoms.

 

[Clearwater AL]

"I feel like I have a lot of symptoms..." Yes, you feel you have a lot of symptoms. But... they are not ALS.
To linger here, an ALS site, accomplishes nothing... for you and us. I hope after 4 years... you, someone,
your doctors can find away to get your mind off ALS.

Self help does work along with other help. Start with self help... sign off this site.

 

[Mhinz]

Hi, I got the results of my esophageal manometry and it was normal, but the last few days I have felt like there is a band around my knee and calf (only my right leg) It's super firm and tight, it makes walking difficult.. does that sound like spasticity? I'm currently waiting on my primary care appointment (not until April) I know my questions are frustrating, I'm sorry. I just don't know what spasticity feels like.

 

[Bestfriends14]

No. Please take further questions to your PCP. Moreover, please stop asking the terminally ill to quell your HA; it's not fair, nor is it kind.

Good luck to you.

 

[Mhinz]

You're right. I apologize. Thank you for your response.

 

[affected]

What happens when people are convinced they have ALS is this. Each time a doctor rules out something through a test, within days they 'develop a new symptom'. Usually in another part of the body.
We can't diagnose spasticity by description, but your doctor can diagnose it by examination.
Please take every new concern and symptom to your doctor.
thank you

 

[lgelb]

If you can't get an appointment till April, I would encourage you to use telehealth, which is free or cheap, and chat about these concerns. There is a lot you can do on video. If your PCP is not available, someone else within your clinic, network or the vast telehealth ecosystem definitely is, and sites like e-psychiatry offer telemental counseling. You can talk with someone today. Don't hide in the fear corner -- find another spot.

I am closing this thread so you can get to work on that.