Progressive symptoms. Not being taken seriously.

[ashbee]

*I tried to upload video of bad tongue fasciculation, I couldn't.*

Hi, I'm 29.

I've had ongoing symptoms since last year. In June starting with ataxia and vertigo. In November I noticed some difficult swallowing. I'm February started having choking episodes. In April started having muscle problems with my my throat it would vibrate. Developed vocal chords dysfunction. In April the muscle weakness got worse.

The most bothersome is weak chest diaphragm muscles. I stop breathing with my CPAP for obstructive apnea I've used for years at night now. It's like my brain forget to tell my chest to move now.

I've been in bed dwindling for the past two months. Lost 30 pounds. Haven't been able to work, because the breathing and cognitive issues that came along with this. I have very bad memory, sometimes I can't recall words or my family members.

I have no insurance, so it seems I will get no help for whatever I have. The hospital has only been saying I have acid reflux and anxiety. And not taking me seriously. And they told me it wasn't possible to see a neurologist in the ER.

I'm afraid I'm going to succumb to respiratory failure from my chest giving out. I can't afford a bipap or asv machine.

 

[ShiftKicker]

Hi Ashbee-

It's not clear what you are looking for on this forum. The folks here can not diagnose you with a terminal disease like ALS or provide an alternative to proper medical attention. There are so many reasons for the issues you state- have a read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

It sounds like you're in a bad way and are definitely in need of some sort of diagnostic attention and to be followed over time by a doctor, not emergency department visits. Without proper medical insurance, I am not sure what your options are- I am sure others more familiar with your health system in Fla can speak up. Whatever is going on is likely beyond anything this forum can do for you.

 

[affected]

oh please no tongue video, please!

You need to see a doctor somehow - terminally ill people can't do a thing, I'm so sorry. Whatever is going on with you is nothing like ALS however. We are unable to help as Shiftkicker has already said.

 

[Nikki J]

Google free medical care Jacksonville. I just did and there were a number of places if you qualify with low income. It is correct that a neurology consult would not be available in an ED for something like this

start with a free clinic primary care. If you need more than they have on site they would have far more idea of how to access services for you than we would.

get seen and evaluated.

 

[ashbee]

Those places are only for primary care. Not speciality or rare diseases.

 

[Nikki J]

Read what I wrote. Start there and then they would have a much better handle on how to refer to whomever you need. people with excellent insurance have to start with pcps usually anyway. The super specialists do not see self referrals with no prior examinations and testing. My neurologist wouldn’t see me without reviewing my emg

 

[ShiftKicker]

That may be the case, however, they are definitely more appropriate than a forum for those with ALS. As Nikki has stated, they are a start and can provide further direction and information about local resources for your care.