Unsure if MS related

Hi everyone,

I am newly diagnosed and waiting to be referred to the neuroinflammatory clinic, so just jumping ahead and asking questions on here.

I’ve had many symptoms over the last 6-8 years and some I am now able to say were MS. I just wondered if the breathing issues I have had could also be MS?

I wake up suddenly, usually just as I’m about to drop of to sleep, gasping for breath, like I’d forgotten to breath? I’ve also had it in the night too when deeply asleep. It’s not all the time. I may have it for a few weeks, 4 times a night and then it goes and might not come back for a few months or longer. I’ve also had in the past something that I can only describe as air hunger. I can breathe fine and normally, no blocked nose or any feelings on my chest or lungs, sats are normal, but it’s like I’m just not quite getting enough air on each breath and have to take a deep breath every minute or so. It’s very unsettling. Over the years I have been to the urgent care centre twice because it really frightened me. They prescribed Prednisolone in a small dose for 5 days and it went away. It has been put down to allergies, but I’m not so sure?

Anyone else with anything similar?

Thanks

Jackie

Hi Jackie
I’ve had the same thing. In my case, I put it down to having put on a lot of weight over the last few years. I quite often wake up, need a pee and then walk around a bit to relieve stiffness. Sometimes, when breathless I’ve put a couple of pillows under me so my torso is at a slight incline, or will take myelf into the lounge and sleep on a recliner chair which is nearly but not quite flat. In conjunction with the breathlessness, I get acid reflux, which has been largely resolved by omeprazole tablets. Does any of that sound familiar?
Graeme

I think you should check with your GP. Not everything is down to MS i dont think i have ever had this and would be scared if i had lol. xxx it can be down to anxiety too.

Thank you for your replies.

I’m a reasonably (just) fit and healthy 44 year old. When I look up anxiety, it is usually accompanied by other symptoms, like impending doom or actual worrying, but I don’t have either.

This is something that comes out of the blue. The 2 times it has happened ( over a year apart) where is wasn’t a one off and continued for over a week (feeling like I need more air and waking up gasping), I have been to the urgent Care Centre and the Prednisolone has cleared it up. Fingers crossed I have not had it since (last time 2 years ago).

Now I just get occasional gasping just as im about to fall asleep, just like my throat stopped working for a second. I gasp and then it’s gone. Again, this tends to happen in clusters, as in once a night every night for a few days or a week, then gone. I don’t have any colds, or acid reflux or post nasal drip or any over symptom.

I will be asking my neurologist Dr or my MS nurse when my appointment comes through, just wondered if anyone had anything similar.

Thank you for replying

Xxx

the trouble is not everyone gets things the same. You cant just say ANXIETY DOES this or that. its like MS everyone is different.

I have had anxiety, and it comes from no where suddenly when i am not even thinking of anything bad. its good for you to talk about this with your GP and get it sorted. x

I do understand what you are saying, but a course of Prednisolone would not solve it if it were just anxiety. X

Hello,

Is there any chance it could be sleep apnea? It sounds quite similar but I’d 100% see a doctor as well as contacting your Neurologist?

Hope you start feeling better soon!

So I think I have answered my own question and the answer is yes.

I asked for my written MRI report. I have tiny T2 lesions on the pons. This is responsible for lots of things, including regulating breathing.

I had several episodes of keratitis at the same time and have been prescribed eye drops for life for chronically dry eyes. I don’t have dry eyes, it just happened in episodes.

Turns out the pons is also responsible for tears too, among its many other jobs.

Jx