Worried and anxious for ALS

[Jack87]

Hey guys,

i usually just read your pinned Thread and move on but lately im really concerned and cant find rest in mind (sorry engl. inst my first language)
My current episode startet around a year ago with me having the feeling to mispronounce a lot and having cognitive recline so my brain startet wrapping it in the thought that must be FLD as this could happen in my age of 32.
I always had that strange feeling in my mouth that my tongue doesn't press hard enough against my throat so that i had problems swallowing. Everything just self perceived.
Went to the 1. ENT...nothing to worry besides to big of a Uvula and tonsils.
1. Neurologic did eeg, ct, ultrasound, cognitive tests,
2nd Neuro did vep,aep,eeg, and quite an eccessive cognitive testing...everything just fine. Cognitive side felt better but the swallowing and slurring stayed so my brain moved on to ALS and settled there end 2019. When i told the 2nd neuro about my swallowing and new come up twitching he didn't wanted to look further, he said the Ent said its ok and he could not see the slightest sign of a neurologic problem. Thought he offered me to come back this August to give my mind some rest and he said he could even do an emg to ease my mind then if its still a thing. So my brain went in to "maybe he saw something, wasn't sure and ordered me back...just didn't want to concern me".
In January i got hoarse as well and it stayed for weeks so i went to another ENT. Told him the swallowing and the hoarseness. He did a swallowing study and a fiber optic thingy through the nose. Swallowing fine and vocal cords fine. Went back a 2nd time to him after some nose oil for 5 weeks.
I was still hoarse but neither my girlfriend could hear it nor him. Vocal folds still fine. Told him about my ALS anxiety but he said there is nothing changed in the ENT area. Still ordered a barium swallow where he said its just for me , he doesn't think there is something (in 2 weeks, you can imagine what my brain thought about it ;-)). Additionally my shoulder startet to hurt badly for some days and stays with a little pain since then. Arm feels a little bit weaker but the dr. couldn't feel it and gave me physiotherapy which im currently undergoing.
I also had breathing problems from time to time but lung function and oxygen were really good. GP said there cant be a muscular thing in the diaphragm which such a volume. So yeah in summarize:

-twitching everywhere..some day here some day there, sometimes less, sometimes more
-problems swallowing perceived but not seen by dr.
-slurring perceived but not heard by dr. or gf
-shoulder pain and perceived weakness (still doing weights)
-scanning body everyday for the slightest dent´s, every issue seems connected to ALS
-problems breathing for a while but lung fine and jogging as well without issues.
-Barium swallow in 2 weeks, Neurologic again in August

-history of cardiac issues (heart attack with 27 for no reason) and health anxiety since this date.

Now that i read this it might sound minor and i want to apologize for taking your time but it seems a real burden on my shoulders i cant seem to handle atm.

Thanks in advance for your answers and sorry again for my englisch.

I did not found the edit button. Just wanted to add that the twitching got more annoying the last days. Feeling a constant twitching and vibration when sitting in both legs everywhere.

See my problem with showing it to someone....3 hours later...no twitch, no nothing ...some days maybe and back again

 

[KimT]

Since you seem to have had thorough exams by both an ENT and neuro, I don't think you have much to worry about. Twitching is very common and non specific. ALS does not come and go and perceived things mean nothing.

Please continue to work with your doctors, especially about your health anxiety.

 

[affected]

Go back to your doctor and ask for help with your anxiety, you know you don't have ALS. I hope they help you. We sadly cannot.

 

[lgelb]

Having a heart attack at 27 would be a shock for anyone. I am sure you have EKGs annually and are under a cardiologist's care to reduce future risk. Reducing your cardiovascular risk also includes reducing stress, which is heightened by health anxiety. So that is something to work on, perhaps with counseling. You might also check in with your doctor about any blood pressure medication you might be taking, or could consider based on the data from something like a 24-hour Holter monitor.

Since you mentioned enlarged uvula and tonsils, you might also ask about a sleep study to see if you are getting enough air during sleep.

Fortunately, nothing you have said suggests ALS in any way. But as per above, there is much you can do to feel better.

Best,
Laurie

 

[Jack87]

Hey guys,

thanks for your help and answers.
I know it might be time to get psychotherapy again. I tried it multiple times but it never helped. I also just stopped my nsri venlafaxin as i finally wanted to get rid of it.

For the heart... Yeah i have controls twice a year. Had multiple mri. A reason was never found. Maybe a blockage from birth on. Luckily everything went quick when it happend so i got reanimated instantly and cath with one hour. No damage to the heart no further blockadge. Just the stent. Blood pressure is fine with little medication.

We did a sleep study withe the first ENT as im snoring often but it was fine.

I hope the barium swallow can give me some rest.
Thought im not sure how detailed they can show this.
The swallowing is currently the most annoying feeling as it regularly gets my thoughts back on the topic of ALS. It feels so strange and powerless at the end of the tongue wherr it presses the throat.
Its basically making the automatic process of speaking and swallowing a manual controled thing for me i tend to focus on and it feels straining in the mouth. Sorry its a bit hard to describe.

Anyway thanks again for your thoughts and attention anf for the service you are doing to the people here.

 

[affected]

My husband was bulbar onset ALS and you are not even remotely describing how it starts.

Before you jump way ahead, let your doctors decide how to proceed with what test in order and follow their advice.
You are being hyper-vigilant and this accounts for much of what you are describing, so let your doctors guide things.

 

[Jack87]

Hey guys

i came up with a question and thought you might be able to help out as its related to my symptoms althought i just learned about it, so that i didn´t mention i above.

How early do pba symptoms appear?

It might be the withdrawal but since i stooped my long term Velafaxine treatment i feel tearful and weepy all the time for no apparent reason or even for beautiful nice things. I googled it and i showed me this PBA stuff which made me worry again.
There is no laughing involved and no actual crying speels. Even if i provoke it with a sad movie its just some tears.

Its usually in the Morning...feeling like a pressure in the face and a strange feeling in the belly as if i have to cry for no reason.
And i get quite watery eyes in slightly sad or beautiful situations.
So is this the withdrawal or did the Venlafaxine just cover the pba symtoms as ssri/nsri are sometimes used to treat them.

Thanks for your help again and a nice rest week.

Edit: I men´t its usually worse in the morning...but it is there the whole day. Its not time dependend.

 

[Bestfriends14]

It's sounds like you have a raging case of anxiety. You've been cleared of ALS, both through clinical tests and no ALS symptoms. Continuing to post and pile on non-ALS symptoms to soothe your anxiety, is asking the members here who type with their eyes and are totally immobile, to handhold you through your nosophobia disorder. How unfair!!

You do not have ALS (for the final time), so best to go back to your doc and ask him/her these questions, because you really, really, really do not belong here.

Best of luck to you and stay safe.

 

[lgelb]

Stopping venlafaxine often causes withdrawal symptoms that can last a few weeks, so feeling off is quite normal. But an SSRI cannot "cover" PBA, a completely different kind of emotional state. And PBA doesn't happen apart from an underlying disease. You do not have ALS or PBA. Tape this to your mirror.

As you make your way through, there are all kinds of people and organizations offering free or low-cost individual/group bodywork, mindfulness and other therapeutic activities online in these times. Not everything will be right for you, but if you keep looking, something/someone will speak to you. Reach out and you will find that it pays great dividends.

Best,
Laurie