Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Cannot catch my breath :(

geeky
geeky
Hello all, I hope this post finds you well. I'm new to the forum and new to this illness, even though I've apparently had it since adolescence!

My journey has been so confusing. I've suffered from muscle weakness and respiratory weakness since my teen years, but it was mild so no one ever got concerned. I just tried to avoid demanding sports, running and singing to a certain extent. Sometimes I would be having a long conversation with a family member and become breathless but they just told me I wasn't breathing right and stuff like that (what is 'breathing right'? lol)

If I had stayed that way, I probably would not be posting this today, as all I had to do was to avoid certain activities (and rest) for my symptoms to become manageable. Things have changed, though. I'm in my early 30's now and have found that on bad days, just saying a few words can make me breathless.

This week has taken the cake though, as I've been breathless for 3 consecutive days without even having spoken (I have begun writing in order to communicate with my family). I am waiting for a doctor's appointment but am starting to feel tempted to visit the ER.

Does anyone here experience what I describe? It seems my MG is mainly respiratory (talking is much worse for me than walking).

On top, I haven't yet had confirmatory studies. Hopefully I will be given medication anyway if my symptoms go downhill even more.

Anyway, hopefully I will get to meet with everyone. Feel free to PM me.
Barbel
Barbel
Please be careful MG doesn't play fair. A trip to the ER might ease your mind. I have never had a crisis , but I am sure some here on this forum will tell you to go to the ER. Keep in touch. Have you been to see an MG specialist? Praying for you. Barbel
Moortje81
Moortje81
I also have a lot of problem with my chest and breathing. Then im at my worst I often cant talk very much either. For me it often helps if I just lay down and rest and do nothing. If it doesnt help with rest then its very dangerous. But now I even have Mestinon, so its a difference because you have no medication. Before I was put on Mestinon I often just stayed in bed during bad days. I went to the ER at one point then my breathing was bad. So just do it if you feel its to bad. It can go fast with MG and its very unpredictable.
judithwilson
judithwilson
Trouble breathing is always a red flag. It's tough going to the ER if you are not yet diagnosed with mg. Before I was diagnosed, I had a terrible time breathing. Every trip to the ER ( and 3 different hospitals ) treated me for anxiety. But I would still go to the ER. Make sure you keep reinforcing that you probably have mg. Things can go bad quickly. I was on a ventilator for 3 days before they finally figured out I had mg. Is your apt. with a neuro muscular specialist?
Good luck

Judith
deleted_user
deleted_user
Welcome....Sorry to hear what you are going thru..breathing problems are unfortunately common for some with MG and can get every serious for sure..Are you on any meds at all??? I agree you should find a neurologist that specializes in MG and if your breathing gets worse may not hurt to go to ER and make sure all is ok..As all have said can degress very fast...Try to find the right dr and get started on a treatment plan whether it be MG or something else....Sorry for what your going thru, alot of us have and not fun....Sometimes finding the right dr is the hardest..Good luck and keep us posted!! Jacki
annkemp
annkemp
I could only feel my breathing and I went to ER and told them I had MG. Immediately they had me in and by evening I couldn't move at all. They said I got there just in time. With in a week I was on a respirator.
You need mestinon. You really should go to the best hospital you know of, when you go in you need to tell them you suspect you have MG and you are having trouble breathing.
This is sosososo serious.
Bamboolilly
Bamboolilly
So sorry to hear you are having trouble breathing. Our resident Doc B Weeds would say to do a breath test, the info under the myastenia links group. But in the meantime, the ER is the place to go....now.
Wellness,
annkemp
annkemp
did you know that when you cant get your breath it is MG in muscles that control breathing. They are weakening and you need treatment.
limpnoodle
limpnoodle
When I know I need to get extra treatment is when I get breathless. I know exactly what your saying about running out of breath when talking. I used to think I was not stopping to breathe when I was involved in a conversation and didn't figure out till I got much worse.
Hope you get it all sorted out soon.
geeky
geeky
Thank you so much everyone for taking the time to reply. I do feel slightly better when I lay down but not enough to be active or go about chores.

Hi Judith, I have the same issue where I feel I will be treated for anxiety if I go to the ER. Basically all my family members think I'm anxious, even though I tell them I feel as if my diaphragm is weak (is that what you guys feel?).

Don't get me wrong, I have had this feeling before, just not to this intensity and duration.

I haven't yet been diagnosed formally which is what worries me right now. I do plan to go to the hospital on Monday because I didn't even have health insurance but my mom bought it for me and it kicks in Monday.

I'm sure worrying makes the symptoms worse, I just don't think it's just anxiety, especially given my long history of unexplained 'respiratory weakness.'

Hugs to all :)
Moortje81
Moortje81
I feel the same way - as the diaphragm is to week. I often find it hard to lay on my back. Its like an elephant stand on my chest. People often think its anxiety and even the doctor I met in the hospital said that. So I really understand your concern. Its a tricky one when you are not formally diagnosed. Still you have to listen to yourself and your own feeling.
annkemp
annkemp
a respiratory therapist once told me.....yes you are anxious because when we cant breathe we get anxious.
Only people who know our condition understand. We have to not waste time with people who don't understand and get our selves in the hands of people who do.
geeky
geeky
Hi Moortje, thanks for the support. This disease can be very frustrating because it seems most doctors aren't familiar with it. When I first raised the issue with my breathing, the doctor didn't even mention it as a possibility. All they they considered was heart trouble/asthma and when that didn't appear to be the case they said I was fine. SMH. They didn't even ask questions or investigate any more. It makes you leave their office feeling like you might be crazy.

Hi annkemp, thank you so much for the advice. I do hope it gets better because I don't even want to think what awaits me otherwise :( Hopefully with medication things will change for the better.

What's strange is I didn't get any sleep the other night (that usually kills me because I tend to get worse the longer I stay awake, so 2 days awake in a row are a no-no) and I wasn't super dyspneic but I did get a funny feeling while swallowing food, like little particles kept getting stuck. I remember hearing someone with myasthenia complain about that before. Hopefully that will also clear with medication.
ahpotts72
ahpotts72
Welcome to our little family but I'm sorry to hear about your breathing troubles. If you are ever in doubt as to what you should do please go to the ER. I know that you don't want to rush to the ER every time you are short of breath but if you are winded after walking from the kitchen sink to the stove then it's time to go.

The very unfortunate thing about this disease is that things can get very bad, VERY quickly. Don't doubt your instincts.

I hope that you start feeling better soon and once again, welcome.

Angie