Respiratory Onset. 28m All same symptoms. Need help

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Vincent 26

New member
Nov 1, 2022
Learn about ALS
Los Angeles
Hi! I just need help because I still don't have any Dx with my symptoms. I used to workout really hard and always pushed my self 1-2 hours at home. It all started with neck tightness and spasms 7 months ago then moving forward after 3 months A full blown spasms all around my body mostly on my diaphragm and joints with fatigue.

At first symptoms I thought it was arthritis so I went to three different Rheumatologist but they said I don't have it clearly. Pain kept going and I was given muscle relaxants and given some neck supporter because I've been having really bad neck pains that wont go away. I have a clicking noise in my neck when I swallow and its uncomfortable to swallow because of the pain. They did some neck x ray and ct scan and only thing they can find is that my neck is really tight.

3 Months in my calves will cramp really bad each day then moved to my stomach then to my chest area... after the cramps, weakness and shakiness on my left arm started, I thought I was just tired from lifting heavy stuff from work so I really didn't pay attention to it.

5 Months in the twitching happened to my calves then went all over my face mostly my nose and lips. I could feel it inside my stomach like someone is knocking inside.. My arm will get numb for a like a week and as usual I ignored it.

6 (Months this is the time I suspect something is wrong with me and IDK what it is and I have no idea what ALS was until I searched all my symptoms in 1 go. I didn't know what ALS bucket challenge was I thought it was just a trend and I was young and ignorant that time. Everytime I search my symptoms it just shows Lou Gehrig so I ignored it because it sounded like a name of a person but I was curious what ALS was so now I'm here). The twitching went all over my body, internal shakiness and I can't even sleep anymore to the point that I have to use melatonin every night. I have really bad hypnic jerks and I could feel all the twitches when I have a blanket on me. I got referred to sleep clinic this coming Nov 13. There is this one time in weeks ago that my right tricep would twitch non stop 24/7 and it lasted for 3 days and noticed my right hand atrophied and felt tired/dead after the twitching stop, note that I'm right handed and its clear that the right hand is bigger than the left. I get groin cramps and costochondritis. My chest and back will crack everytime I do deep breathes. Both my pinky fingers are weak and holding chopsticks on the right will cause tremors and I can't even hold a sushi with it anymore :(. They did my Brain MRI and everything was clean.

7 Months in my breathing started to get harder, on our trip to vegas my room mate told me that I couldn't breathe at night and was gasping for air 3 times but I don't remember any of it. I have so much saliva and my voice kind of disappeared and I sounded like there's phlegm in my throat so I had to keep clearing it everytime I talk. Laying down on bed I can't breathe properly so I have to stack pillows behind me to breathe properly. After our trip to vegas my tongue won't work and it was floating and my face drooped on the left. I was diagnosed of Hypokalemia because of low of potassium. When they discharge me and the moment they removed the I.Vs my breathing started to get bad. Of course nothing I could do. Peeing gets harder and coughing gets harder plus my tongue would cramp specially on my sleep.

Oct 29 I woke up laying down in bed feeling like I'm going to pass out. My vision that time was really slow and my chest was tight. I kept breathing but I couldn't get any air so I had to stand up and do some breathing exercises. I could feel my diaphragm twitching non stop for a whole week on the left side. There are times that I have a twitching inside my nostrils blocking my breathing. I told my dad to bring me to urgent care and to come with me because Dr.s wont take me seriously. So we went and I told them about my breathing, UC DR. told me my nostrils are blocked and my oxygen levels were dropping but was not concerned because I'm young? They did and EKG and its normal. I was prescribed Nasal spray. copy pasted diagnosis below.

Today I had a neuro appt. Nurse checked my BP and my heart was beating so fast so she had to redo it again. She said its prolly because I was coughing and said that I'm too young to have heart problems. (My weight is 68kg and 5'4 height.). Neuro asked why I'm there and proceeded to ask me questions. I was not able to give every problems because my breathing is so bad already that its the only thing in my head. Neuro started doing tests, with hammer, muscle test, told me to walk squats. She told me I had BFS and my breathing could be anxiety??? Bro Im literally catching air everyday and walking gets me tired now. I explained everything with my sleeping problems and breathing because that's my main concern now and I can handle all the pain. She referred me to psychiatrist. I thought I was finally get my diagnosis so I can get a bipap machine for cheap price.

I made a call today (current location is CA/LA) for pulmonologist outside pocket payment and its gonna be on nov 15 but my breathing is already hard and I don't know if I could even make it at this point. I will try to find more pulmonologist that can see me earlier because my breathing is really concerning now and ALS or not this disease is moving so fast. I prepared every single thing . I drink b-12. d3- magnesium etc. All my blood test was normal except for my potassium being close to low but still on good levels.

TLDR: my current symptoms in order. Neck pain spasms, Full body spasms, Calves Cramps, Full body cramps and Fatigue, Full body twitching and Weakness/Shakiness. Face drooping left and right. Swallowing problems, Excess Saliva, Breathing problems.
I'm so sorry you are going through this.
ALS breathing issues are very different to this, I can assure you of that.
You could start lots of things such as meditative activities, anything that is calming, deliberate breathing techniques.
You don't have long to wait to see the pulmonologist and this will hopefully bring you to a place of finding some real answers.

I doubt you will find anyone here that will see anything of ALS in what you are describing. I truly hope you get some answers soon, but do spend this time working on everything that will help you keep your breathing steady and keep you calm. It could make a huge difference to this next 2 weeks and you will never get them back regardless. Can't hurt to invest in yourself.

Let us know how that appointment with the pulmonologist goes.
Your BMI could suggest a higher risk for sleep apnea than other people your age, and your roommate hearing you gasp for breath supports that possibility. Low potassium could relate to stress and the need for a more balanced diet. It can also be seen with hypertension, which is also related to needing to lose weight, and breathing fast, which is associated with both. So you have a lot of problems that are often related, but not neurology problems. Anxiety may be in the mix as a root or a flower.

When you see the pulmonologist, I would mention the Vegas trip and ask about a sleep study, which can be done at home, but before that, you can ask your primary care doc about an EKG (that person can also order lung tests/a sleep study, or refer you). Meanwhile, you can also video your sleep.

I don't see any reason to think of ALS or anything like it, but you have something going on and should get whatever treatment is appropriate.

Thanks for all the positive replies! this morning I felt my twitching has moved to my right leg from my left diaphragm. Everytime I breathe deep I can feel pain on my left side on the back, the pain is really sharp. I'm thinking of going to E.R soon if the pain is still there tomorrow.
You should stretch and keep hydrated. No need to report anymore symptoms since they have nothing to with ALS. Good luck to you
Vincent, key sentence 8th paragraph... " She referred me to psychiatrist."

Did you go? Or... seriously considering it? It certainly maybe very helpful
for your considerable Health Anxiety.
We can't really help further here.
If you get test results such as pulmonary or EMG even better, post them for sure.
As I said, this is not how breathing issue with ALS go, so please get help as this could be treated.
If you are really concerned with Respiratory Onset ALS, you will really need to be persistent and monitor your symptoms. I do have a question for you-did you have Covid or the vaccine before this all started?
The reason I'm asking is that my PALS (mom) was diagnosed with Respiratory Onset ALS in June and is now on a Non-invasive ventilator about 17-18 hrs/day and I know it's the only thing that's helping this rapid progression. Covid is a respiratory disease and we thought my mom was a long haul Covid case but it took a year of appointments, a stroke we didn't realize she had after the vaccine and the woman has complained to every cardiologist, pulmonologist, EMT, neurologist for a year straight that she just can't catch her breath and after all those test and appointments and ruling out every possible MND she was finally diagnosed this summer. To be honest, I am so thankful she wasn't diagnosed last year because, other than the fact she could have started Riluzole and Radicava sooner, I'm not sure it would have made her feel any better to know she has ALS and it's rapidly progressing. I know during the last year though we felt the same way you did and she just never seemed to get better. The breathing won't get any better if it's respiratory onset ALS, so you'll know if your breathing continues to decline. If your FVC gets below 50%, more than likely a Pulmonologist will prescribe a BiPap to help with your breathing. Best of luck, I hope it's not ALS, keep us posted!
Welcome to forum CAW - please go to either general or CALS discussions and introduce yourself so we can see how we can support you.
It's also not real helpful to suddenly start pulling up old posts and responding as we hope the OP has moved on and received help.
We would love to support you however.
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