Jaycee

Hi Jaycee, I’ve been having the same symptoms you described in your posts. You seem very level headed about all of this (I am trying to be but it’s hard after 6 months). Would just like to know if you have any more information since your last post a year ago. It would be very much appreciated. Thanks in advance.

Matt

Sorry posted that message by mistake and didn't finish.
If you want to continue this conversation you can email me, it'll be easier for me to reply.
[email protected]

Hi Jaycee,

The lung specialist viewing my results showed no concern about my spirometry yet I know this was not kind of normal. My FVC was 79%, FEV1- 84%, and the ratio was 90%. I also had a chest X ray which showed mild hyperinflation and also minimal biapical pleural thickening (not sure what caused this but I had it 5 years ago too). So now I am not thinking about ALS much though the symptoms frightened me in the beginning. You should not worry about it too. I am sure that "something" we have is not ALS.
I saw a neuro a month ago, had an EMG, the doc said that everything looks perfect.
I am going to have a sleep study next month. I am going back home for 3 weeks soon so I am going to have some tests done there (it is easier and faster than here). I will do a CT of my lungs, maybe will see a ENT and do some tests for my throat (fib laryngoscopy). That ENT I saw here was dismisisve so I don't really trust him

My symptom

Hey there,

I kinda have the same symptoms as you (for like 5 months now) and I am 25 years old. I would like to ask you a couple things. Can you sleep normally or do you wake up every couple hours? How is your coughing if you work out ( I cough like crazy whenever I work out/ also my muscles feel dead a couple days after)? How is your swallowing now and how did it start ( I've had a weird pain in the right side of my neck, couldn't swallow, but it went away over days/weeks, stll have the lump in the throat feeling). I am going to a neurologist in 2 weeks and would like if you could keep me updated about your progression.
Best of luck to you !
Cihan

Hey there,

thanks for your message. I can imagine how hard that is for you. I really need to push for an EMG and I know I should have but he blew me off. Yes I have but there's not a lot we can do at this point as nothing is helping me. I think i need to see someone who specialises in the MSK areas of neuro. I hope you get some good answers soon