ALS- I’m back with a new fear

[BirdieS 7]

I was doing so, so well...

In therapy once per week doing CBT and on a low dose of Lexapro.

Then I read an article about a woman with ALS and I’m incapacitated.

I’m having weakness in my left arm and tingling in my hand. Went to the doc and was diagnosed with carpal tunnel. That was Friday. But now the weakness has spread to my left leg. And I swear I’m feeling twitches. All of a sudden I’m right back where I was, with the obsessive thoughts, hyperventilating, and uncontrollable crying. I can think of nothing else. My therapist has insisted that I do not have ALS, but why am I feeling this way? My head is also feeling loopy, almost like an out of body experience.

If anyone has any way to help with this, please let me know. I would be forever grateful to you.

I should mention that my dose of Lexapro was increased approximately 10 days ago. At first I felt no different, but felt like this was worth mentioning.

[MARC 431]

I have known a number of people who had ALS and their symptoms were nothing like yours. Also try to remember ALS is an extremely rare disease with only 5.000 cases diagnosed each year in the US. Compare that incidence with cancer and heart disease and their is no comparison. 

[BirdieS 7]

Thank you so much for the reply, Marc.
 

I’m doing a bit better but still feeling shaky, weakness on my left side, and generally off-balance. I know the mind is a powerful thing, especially for us folks with HA, so I know it could be all in my head and I’m spending lots of time using the tools my therapist gave me. I’m guessing this could all be due to the increase in my dosage. And to be honest, I’m not allowed to google or body check as per my treatment (sometimes I don’t know if that’s a good thing or a bad thing), so I don’t even know what the symptoms are of ALS.

[Ironman 198]

5 minutes ago, BirdieS said:

Thank you so much for the reply, Marc.
 

I’m doing a bit better but still feeling shaky, weakness on my left side, and generally off-balance. I know the mind is a powerful thing, especially for us folks with HA, so I know it could be all in my head and I’m spending lots of time using the tools my therapist gave me. I’m guessing this could all be due to the increase in my dosage. And to be honest, I’m not allowed to google or body check as per my treatment (sometimes I don’t know if that’s a good thing or a bad thing), so I don’t even know what the symptoms are of ALS.

Well, the known symptoms of ALS won't change so there is no point to repeatedly Google information that hasn't changed.  If you don't have it now, you won't have it tomorrow, or the next day.  It doesn't appear out of the blue even for those who have it.  Twitching muscles - you probably need hydration or a stretch.  Tingling sensation - a bit of movement :)

[Bobnnat 496]

Birdie, with ALS weakness is not perceived, it’s objective, meaning your muscles simply won’t function. Weak legs? You can’t climb steps. Weak hands, you can’t hold a coffee cup or turn the key when entering your home. Sadly, when someone has ALS, that person doesn’t wonder whether something is wrong, they know something is awfully wrong.

Other than anxiety and likely medication effects as you’ve described, you’re fine 😀

[Gog13 2]

Hello friend:)i'm in the same rabbithole as you...it's deep ...idk some days are good some are bad...i'm also having twitches after a verry stressful period and migrating pain everywhere...it started 5 months ago and to this day i've had pains and periods of numbness in every limb...they all came one by one and went away the same way...idk man i'm always trying to think about stuff like ..."it's more likely to be struck by lightning than this"....i also posted about this a few weeks ago...try to focus on the improvements u see daily...im thinking that if a pain improves during one day or if one day im feeling a little better thats good cuz from the shitloads of stuff i red about als there is no improvement just a downhill

[Holls 1505]

On 5/3/2021 at 3:59 PM, Gog13 said:

Hello friend:)i'm in the same rabbithole as you...it's deep ...idk some days are good some are bad...i'm also having twitches after a verry stressful period and migrating pain everywhere...it started 5 months ago and to this day i've had pains and periods of numbness in every limb...they all came one by one and went away the same way...idk man i'm always trying to think about stuff like ..."it's more likely to be struck by lightning than this"....i also posted about this a few weeks ago...try to focus on the improvements u see daily...im thinking that if a pain improves during one day or if one day im feeling a little better thats good cuz from the shitloads of stuff i red about als there is no improvement just a downhill

Hi again! I was an als worrier. Sadly for almost and entire yr. It can def be a dark destructive rabbit hole. Please run out now. Yes you are right, there is no having a good day with als.. it gets worse and worse. You also don't have any symptoms that go with als. My husband has had numbness come and go at different places.  It has stopped for him...I had twitches and weakness and some cramping in my calves at night,  But it was my anxiety causing it all. Have you gone to your Dr? Mine said nope right away but I by passed her and went to a neurologist. He wanted to do a nerve study and my husband put his foot down and that's when I knew I had to get better. Took awhile but I am 3 years out from this worry. Hugs. Please don't think als. It's def not that. 

 

[Doug97 19]

Subjective sensation of weakness doesn't count, there needs to be an objective clinical sign of weakness. 

 

This guy basically had a nervous breakdown because of his fear of ALS, he talks about his arm and leg "feeling like jelly", but there was actually nothing wrong with him. Apart from hypochondria, of course. 

https://www.theguardian.com/news/2016/aug/04/perils-being-your-own-doctor-als