BiPAP Machine Got Rid of MS Hug! I Can Breathe, Talk, & Sleep Again

By jueng

3 min read

A BiPAP machine changed my life! I do not get any more MS hugs because of it! Like with any type of muscles you stretch them and that's what you need to do is stretch the intercostals. And a BiPAP does that.

I was told I didn't have breathing problems

I was told by several neurologists that I didn't have a breathing problem. That I was too early in my MS to have breathing problems that it was just the MS hug. It wasn't until I decided to go see a pulmonologist and get a breathing test done that I found out my lung capacity was reduced to 80%. Pulmonologist when I said what should I do, he said it's - just the MS hug.

Issues talking and getting enough air

So I spent the next few years having increased breathing problems. But always being told there is nothing that can be done and since my oxygen level is good that I am fine. Yet I was having problems talking and feeling like I could not get enough air in my lungs. To the point that I started waking up at night in a panic needing to sit up needing to take a deep breath in. I went to another neurologist because honestly, I thought I was having sleeping problems. She gave me sleeping pills after hearing my symptoms. Something inside told me not to take them and thank goodness I didn't!

Lung capacity was at 44%

I went to the Mayo Clinic and saw a new neurologist. Told him my symptoms and he said you have breathing problems! And he said if I would have taken those sleeping pills I probably would have died. Me waking up in a panic with my body telling me it couldn't get enough oxygen. He sent me to another breathing test, found out by lung capacity was at 44% because the lung muscles constricted lungs from taking air in and blowing it out. He also sent me for a sleeping test at a sleep aid clinic. And they watched me wake up because I couldn't breathe.

Prescription for a BiPAP machine

He gave me a prescription for a BiPAP machine. So that it will force air into my lungs and help me Force air out of my lungs. Very similar to exercise if you have a cramp or tight muscles you stretch them. Same thing with a BiPAP for the lungs - it was stretching my lungs muscles. The timing was perfect because the day I went to go get my BiPAP machine it was still in the package. I went to bed that night that I would read everything tomorrow I know how to use it, I woke up that night to the seemingly harmless MS hug literally preventing any air from going in and any are going out!

No more MS hugs and my lung capacity is at 85%

I got my BiPAP machine and put it on high and call the ambulance. It took 5 days for that MS hug to calm down. And finally, when the RT got my levels of my BiPAP to align to what I needed I was sent home. Now I use a BiPAP every night and I never ever have suffered from an MS hug again! And my lung capacity has gone up to 85%! I have no idea why BiPAPs are not given as an option for people who suffer from bad MS hugs. It's logical you have a tight muscle you stretch it. That's what a BiPAP does it stretches the intercostals. Otherwise, those intercostals keep constricting around the lungs.

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Lori Foster Member
Wow! What a scary experience, <inline-mention user-id="4076673" username="jueng"/> ! Thank goodness you advocated for yourself and found a new doctor. I am so glad the machine has been helping you. You must feel much, much better. Thanks for sharing your story. Maybe others will see it and ask their doctors whether a BiPAP machine is appropriate for them. Best wishes and sweet dreams! - Lori (Team Member)
1. cherip Member
 Thank you for the words of encouragement, they do help. I just don't understand how I can feel ok one day and the next day, it's all different symptoms! It's very frustrating. But it helps to know I'm not alone out there,I have you all!
cherip Member
Being rather new to all this, I have a question. How do you know it's an MS Hug? I've read every article, seen the videos, and still confused. I may have had them in the past but until I know for sure, I don't go into my doctors sounding like a moron.
1. jueng Member
 <inline-mention username="cherip" user-id="3996303"/>If u feel like your chest is tight or even your back because the ribcage goes all around, you feel shortness of breath- can't take deep breathe, hv to take more breathes than usual while talking. Yr chest can also feel achy. One thing I've learned, if ur thinking about if u hv breathing problems...u do....because otherwise u don't think about breathing. The tightness can also b felt right above the stomach. 
2. cherip Member
 <inline-mention username="jueng" user-id="4076673"/> Thank you for your answer. Now when it happens, I just sit down and slow my breathing for a few minutes. It seems to be helping.
Tamara K Sellman Moderator
Thank you for sharing your story, <inline-mention user-id="4076673" username="jueng"/> , a lot of people do not realize how PAP therapies can be so helpful for people with MS. Best, Tamara, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> community advocate and sleep health professional
lightweaver Member
I am so happy for you. For me it did not help.
1. Lori Foster Member
 Hi <inline-mention username="lightweaver" user-id="4078970"/>. I wish it had brought you some relief. Have you found anything else that helps? Wishing you the best! - Lori (Team Member)
Kim Dolce Moderator & Contributor
<inline-mention username="jueng" user-id="4076673"/> How great that the BiPAP worked so well on your MS hug! I'm so glad you shared this experience with us, I am sure our readers will ask their doctors about this alternative. I will soon begin using a CPAP after being diagnosed with severe sleep apnea. I also experience the hug, as well as what feels like a pulled muscle just below the chest ribs on my left side. Shortness of breath at times, too. I wonder if the CPAP will help with these other issues you mentioned and that I experience. Looking forward to finding out! Thank you SO much for your post, @jueng. Please do keep us posted on your situation, won't you? Cheers, Kim, moderator
1. jueng Member
 <inline-mention username="Kim Dolce" user-id="4084112"/> I have had an eye-opening experience. The use of a BiPAP can help reduce the effects of the MS hug. But are there important facts the doctor is not telling you? I wrote that above article about the use of BiPAP for an MS hug. I had been suffering from difficulty breathing since 2009. I h a d been waking up 3-8 times at night. None of the several doctors I saw in that time either told me I didn't have breathing problems or that I was fine it's just Ms hug something to deal with. Then in 2015, 6 years later, my Mayo Clinic neurologist figured out I was waking up because my lungs were not taking in enough oxygen. He told me it was because of the Ms hug intercostals not allowing my lungs to fully inflate. I had seen 2 pulmonologists, many neurologists, and even a hospital stay because I had an episode where I literally couldn't breathe. All of these people told me it was the MS hug. IT WAS NOT THE MS HUG! I was born in the 70s. I think I'm pretty savvy for technology enough to do day-to-day oh, my kids would tell me differently! I research and I write out questions and I would write out timeline of my symptoms so that I could go in to any appointment dealing with my MS prepared. I knew I had to advocate for myself. And I thought by doing all of this communication with my doctors you would think I was getting the straight story. I WAS NOT. Beginning of 2021 I noticed a definite change in my breathing and it was affecting me that talkin had become exhausting. I made an appointment with the same pulmonologist who told me my breathing test results are good. That I was all set back in 2018. He never mentioned about a follow-up that I had my BiPAP and that will take care of what I needed. You could say oh, you never thought to make another appointment from 2018 until 2021 when your breathing took a downward spiral? No I didn't. Because they all said it was because of the MS hug and my lungs are fine and my breathing test results are good and the BiPAP will do what you need. So when I would research I used it from the perspective of the MS hug. What I should have been doing was reading the DOCTORS' CLINIC NOTES. So now I'm in 2021 with a definite progression of my breathing. The previous year I started using online medical chart for my doctors. Mostly because it was easier to make appointments. I call the same pulmonologist and make an appointment. He sends me for routine breathing tests. I got notification before my appointment that my test results came back. So, before I relied on the doctor to summarize my test results, I thought cool now I can review b4 I go to my appointment and be more prepared. I was shocked Beyond shocked at what my test results stated. I had STAGE 4 LUNG DISEASE AND 34% LUNG FUNCTION. My same pulmonologist stated these results due to neuromuscular disease of the lungs. I was like... What?! I had been told that I don't have breathing problems and then when it was recognized by all of the doctors said it was due to the MS hug. Needless to say I went online and researched neuromuscular breathing problems. And ALS came up a lot. So I had my questions went to my pulmonology appointment. He never brought up the word stage 4 lung disease or neuromuscular lung disease. I brought them up and his response to me was like to get a CT scan and see what the results are. My results showed I had increased scarring of my lungs. Basically parts of my lungs deflates because it is not being used because I do not fully inflated or deflated by lungs. The whole use-it-or-lose-it. Again I got a message on my online medical chart that the doctor looked at my results of the CT scan. He said my lungs look good. I was flabbergasted, because it is not good. That your lungs have scarring. Not to mention I have stage 4 pretty much Stage 5 lung disease and I am 50 years old. I mentioned all of these things plus more. And his response to me was you have a BiPAP you're good as long as your CO2 doesn't remain in your lungs you're good to go. He told me to stop worrying about it. I felt like such a dumb *$$ for believing what all of my doctors have told me verbally. As I researched these new words neuromuscular disease, early breathing problems articles kept coming up that if you're MS patient brings up they have breathing problems early in their disease get them a breathing test and then every 3 to 6 months monitoring for another breathing test. Also add in necessary breathing exercises. Again I was floored, none of my doctors in any specialty provided me the above. They just dismissed or told me it what was the Ms h u g and I have a BiPAP go live your life. I decided to go back all the way to 2010 and I looked at all of my online Clinic notes and Radiology reports and breathing tests. Come to find out back in 2010 with the first pulmonologist in my Radiology report it stated that I had restrictive lung disease which can be caused by neuromuscular issues. And I was actually in stage 2 lung disease back in 2010. None of these words w e r e communicated to me. And my lungs w e r e Clear no scarring. I then went to 2015 when I went to the Mayo Clinic and got diagnosed with breathing problems. I got a breathing test. Again I was told it was MS hug related. I looked at the clinic notes and towards restrictive lung disease due to neuromuscular. I went to the time I was in the hospital because I couldn't breathe. Neurologist I saw did not know why I was having this problem. The pulmonologists I saw either didn't know or said it was the MS Hug. Something to deal with. I again went online and looked at the charts and my breathing test results clearly said restrictive lung disease neuromuscular disease. T h e n 2021 from August to December I had 2 breathing tests & x-rays & CT scans. My breathing test results took another decline just from August to December. And I Radiology reports from August to December showed increased scarring that it is now in the middle of my lung. Everything I've read it is not good for scarring to go to the middle of the lung. And I was officially from August stage four lung disease I went to Stage 5 lung disease in the beginning of December. And for each of those test results my pulmonologist said I was fine. Lungs look good. But you read the Radiology report and there's a different story. I have been blown away I have what doctors tell you in the office and what is written in test and Radiology reports as well as, WHAT THE DOCTOR WRITES in his Clinic notes has been in my experience completely different. Omitting information when talking to me. Describing it differently to me then what was written. I finally was able to get a referral to see a pulmonologist at the Mayo Clinic. He was a sleep pulmonologist. He looked at my sleep results look good. I asked him about my prognosis with having neuromuscular disease and he basically said it will progress until I can't breathe. Offered no help treatment. I'm finally going to be seeing a respiratory therapist and and interstitial pulmonologist. After this long story, I am a smart, thorough, assertive advocate for myself. And I'm left looking incompetent & horrible outlook. What I wanted to get across is look at the doctor's notes and test results every time you have an appointment. Don't believe what your doctor tells you. Confirm it by reading the lab, Radiology & Clinic notes! And if you think u hv breathing problems you do! If you're waking up at night-dont shrug it off. Get a breathing test & sleep study. U can hv breathing problems early in MS. U can get breathing treatments to help slow progression. 
2. Lori Foster Member
 That is all quite scary, <inline-mention username="jueng" user-id="4076673"/>, both the extent of your lung disease and the fact that no one told you. You should have been given the inopportunity to make treatment and life decisions based on accurate information. My heart goes out to you. The whole situation is unfair and disheartening. I hope the respiratory therapist and and interstitial pulmonologist are able to help. What really floors me though is that here you are -- you have just been told this will progress until you can't breathe anymore -- and your biggest concern is reaching out to others to ensure that they do not suffer the same fate. That says so much about you. Know we are here for you on this journey whenever you need support or a place to vent. Please keep us posted if you feel comfortable doing so. Sending lots of very gentle hugs and positive vibes your way. - Lori (Team Member)
everchangingms Member
I am glad to find someone else talking about this. I am still mobile with a cane. MS neurologist at UC Davis has only seen the above in two people paralyzed. My oxygen was dropping on exertion for at least six years. Second problem, was a rare h63D genes that caused iron overload. 17 phlebotomy left me iron deficient for three years and AIR HUNGER. A pulmonologist was brought in, my nighttime oxygen dropping. My pulmonary function test, each one getting worse. Lungs the size of a pea. They set me in a overnight room, and tried a bipap. I will never go thru that experience again. Over inflated me. They put a chit strap to keep mouth closed 1/2 way yhru, then just blew up cheeks, and my spascisity, or as described as weakness of muscles in chest, they bounced back like a rubber band. Since this is Quite a Rare condition, I asked the question to London, Dr Giovanni. https://multiple-sclerosis-research.org/2022/04/q-a-mondays/?unapproved=145191&moderation-hash=247e4ac68194bd2c33543c8068c8d99b#comment-145191 SUEBEE April 25, 2022 at 1:40 am Joey, I agree there is a lack of help for respiratory weakness if mobile with MS in US. Due to self advocacy, I got speech training on breath control when speaking, and respiratory strength training with a spiratometer. Both helped some. Awareness that my breaths had become uncoordinated was helpful so I could mitigate. Also, I have experimented with eating foods/ supps that are supposed to help red blood cells carry oxygen, I.e beets. Strange that such an obvious and measurable symptom is often overlooked in pwms. Good luck. Oxygen helps, and I will call this the End Stage PPMS, aslittle Drs can do JoeY 
1. jueng Member
 <inline-mention username="everchangingms" user-id="3988457"/> Your experience with the BiPAP sounds horrible. But there are BiPAPs that can be specifically tailored to you. I look forward to using mine. Yr BiPAP can be programmed so when yr awake it tailors it's air pressure to u breathing while yr awake. Not a constant blast of air. Then u fall asleep & BiPAP will adjust according to how well yr breathing. Additionally, I use nose pillows fit right into your nose, not encompassing. BiPAP helps to inflate your lungs & get 02 in & c02 out. Which in neuromuscular weakness the BiPAP is yr biggest support system. Through my research & Mayo Clinic doctor & respiratory therapist I've found out that breathing out is the part more important to support & gives results that hv longevity. Especially since stronger exhale relates to productive coughing & clearing which reduces risk for pneumonia. I tried to join a respiratory program but I'm unable to because I don't walk. Since you can, I'd highly suggest getting into one as it can help slow the progression. Since I can't, I was given at home exercises. Mid-day I use a self-inflating resuscitation bag to gv my lungs some expansion. For Expiratory muscle training using a peep valve & mouth piece. If you do start to become wheelchair bound be proactive in supporting your spine-nueromuscular scoliosis. Which could then cause your ribcage to press inward against yr lungs. Again I had negligent doctors who ignored my concerns about my collapsing spine & didn't take it seriously until much progression occurred & screaming w a bullhorn, I got fitted w a brace & a wheelchair that allows me to stand- straightening my spine & allows my chest cavity to expand. The doctor said this is end stage ppms, which based upon the definition that would pertain to me. Basically I've been end-stage for last 8 years. And there are things that can be done. When the reality of my breathing & scoliosis crashed on me , I asked my Mayo neurologist of 7 years why he didn't prepare me, treat me, advocate my situation & his response was..."We don't see people like you- no one gets as bad as you". I somehow became invisible-because too many doctors think there's really nothing they can do-progression unstoppable so they stop seeing u. But there's always something! Isn't my life especially the last 8 years hv worth even though I'm inevitably progressing? I raised children, wife, tutored a student, took care of my dogs, celebrated birthdays Christmas, graduation... Planned a wedding became a grandmother and becoming a grandmother again. Given really good advice. Ate the most amazing cupcakes! Found out about melatonin and that I had the best sleep of my life every night! Imagine how much more I could do or has done or how much longer if doctors had seen my value not my progression and treated my breathing back in 2009 when I was telling them over and over I had a problem. Or my scoliosis in 2017 what I was telling them over and over there is a problem.? How many more grandchild hugs or pets of soft fur or tasting cake frosting could I have had if I had doctors that did their job and saw me & not the futility in ppms.
2. Lori Foster Member
 I am glad advocated for yourself even when the doctors were giving up on you, <inline-mention username="jueng" user-id="4076673"/>, and that you have found fulfillment despite your prognosis. It breaks my heart to hear that no better treatment was offered sooner. Thank you for all the great information about your BiPAP machine. It's good to hear that it can be so carefully tailored to individuals. Thinking of you and wishing you many more hugs and fingers-full of frosting to come. - Lori (Team Member)