Possible Respiratory onset ALS?

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Jb72796

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I’m John and I’m 34 years old and I have had some breathing issues for at least the last 3 years. I seemed to have trouble getting a deep breath. It would come and go in flares. I then caught covid last March and my breathing is now much worse. I’ve also been diagnosed with Ehlers Danlos Syndrome the hypermobile version and also an autoimmune disease called relapsing polychondritis. I’ve had full lung and airway work up since covid to rule out every possible cause of my breathing issues. Right after covid I had developed a weak cough. I couldn’t take a deep breath anymore, specially feels like the right side of my throat, the right side of my chest and right diaphragm are all comprised. They seemed to have to work hard to get a breath. The last 2 weeks my cough has gotten even weaker and I’m very scared I’ve got ALS. I had some leg weakness in the summer last year while bike riding. I noticed that I can’t ride as long as I used to, the muscles feel like they have to work harder to cycle and I get tired quickly. It feels like a decline in strength. My biggest concern is my breathing. I use a CPAP at night right now. I had an EMG done in May last year and it was clean. I just had one redone since the onset of the more severe symptoms. Still waiting for those results.
I had a spinal tap at the time as well which was all clean also. I noticed the weak cough almost immediately after the spinal tap. Like the next day.
My next question is, can another condition cause the weakness of cough? I also had a standing sniff test and showed nothing.
The muscles in my throat also seem weak. I used to be able to used my neck muscles to take a breath and strain a little but now when i try it’s useless. I can’t grab a deep breath. Feels like intercostal muscles are weak also.
Just scared it’s respiratory onset ALS? Going for more tests next week. I had a brain MRI done last year also which was clean. When I cough it’s as though the air flow is very limited and I can feel the muscles around the lower throat, specifically the sternocleidomastoid like being held back and limited in movement. I’m a health teacher so I have some basic knowledge of the anatomy and physiology of the body. Any input is appreciated. God bless!
 

ShiftKicker

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Hi John-

Have a read here for some reassurance: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

It sounds like you've already got some answers about the issues you're having. I highly recommend you join some Ehlers Danlos groups (there are a few on FB, as well there is a national association) to ask your questions, as there are a whole variety of ways that condition can affect your body. While it's a connective tissue disorder, there are some other things it can affect depending on what type you have. It would be very helpful for you to have the support and experience of others with Ehlers to reference as you may be surprised at what others report in connection to it.

While I don't think you have ALS to worry about, it would like you have a lot on your plate. I hope you find some answers, but please don't stress about adding ALS to things!

Take care
 

Jb72796

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What in my thread makes you say most likely not ALS? I also have widespread twitching and stiff neck muscles. MND’s run in my family (Parkinson’s) You’re right it would be too much, but I’ve been through so much this year and I can’t find an answer to why my breathing is getting worse and worse. Constantly on my CPAP. Earlier in summer I had a hard time breathing while standing in a pool. It was life suffocating and now I can’t cough at all. That’s what scares me most. Can inhale much and no strength to cough out.
 

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Sorry for your troubles. People with CTDs such as Ehlers-Danlos should be on BiPAP, not CPAP. If your clinic does not agree, direct them to the latest literature. Or, any doc can write it for you. With the right machine and settings, I believe your breathing could improve. Because of your conditions, whatever machine you have probably isn't "set and forget," either.

As for ALS, if your recent EMG had shown any signs, you would have been contacted, I'd imagine. So that pretty much answers the question. To your question about other reasons for cough weakness, my first move would be to sort the apnea as definitively as possible since the machine may be overtaxing your respiratory muscles, and with hypermobility as your subtype, that could easily affect the ability to cough. Likewise, the cartilage inflammation caused by your RP obviously can play a role in the ability to expand your chest.

So we have two or three explanations for coughing issues that probably overlap. The good news -- ALS isn't one of them.

Best,
Laurie
 

Jb72796

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Having tons of trouble inhaling air and gathering strength to cough. This is miserable. I’m hope my most recent EMG is ok. I’m also seeing muscle weakness in my hands, that has been present from summer last year. This is getting worse, I don’t have pulmonary issues and I can’t understand why I would be so out of breath? My RP is apparently under control, been on prednisone for weeks now and my EDS is not causing it. Had bronchoscopy to check for collapses airway which can be an occurrence for people with EDS or RP. I also had some strange swollen/numbing feeling in my neck and throat when I had COVID last year. Strange sensations. I can’t think of another disease that does this.
 

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Perhaps looking around to see if there is a support group for long haulers of COVID-19. You are coming here to a group for dying people and their caregivers, so you are definitely not in the correct place to talk of what is going on. I think, given the large amount of long haulers, you should be able to find a group to connect with who may share similar symptoms. Thankfully you have do not have a terminal illness. What you have sucks, for sure, but it is not ALS.

Best of luck to you. Hope you find what you need for support. Take good care.
 

Jb72796

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Well, the key is my breathing was like this prior to covid for last 3 years. So that’s where the confusion sets in and now it does feel terminal. I wish it was purely covid, but sadly I don’t think so.
 

lgelb

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I provided you with several non-COVID thoughts. The choice is in no way between COVID and ALS. You don't have ALS.
 

Bestfriends14

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3 years of breathing problems with ALS, yet you are still walking, talking, and eating? Nope, sorry, not how ALS works. You've been provided excellent advice by very knowledgeable members. To argue with that advice implies you think you know better than the members here and your doctors.

Again, you don't have ALS. It's best to be grateful and move on.

Take good care
 

Jb72796

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So the most recent EMG showed mild inflammation of the arms and hands. But nothing else, he said it looked normal. What does that mean to you?
 

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Mild inflammation? Inflammation is not a usual description but there is no ALS related finding that would be described that way. Possibly related to something on the ncs which points away from ALS. This means to me that the emg did not show ALS this time as it did not the first time. You need to ask your doctor exactly what they meant. You might want to pursue Laurie’s suggestions but your answers are not going to be here

good luck
 

Jb72796

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Sorry I mean the NCS, and also he meant like nerve inflammation you would see in carpal tunnel or people who work on computers. Everything else seemed normal to him and he said it doesn’t point to an MND’s
 

Bestfriends14

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Fantastic news about a clear EMG for ALS. Yay! You no longer need to be here and that is great thing. Lucky you.

Take good care and stay safe.
 
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