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Breathing ? Longish post)

For >1 year I've had trouble breathing. Last year, My PCP thought it might be asthma and gave me an inhaler that might have helped slightly. Chest X-ray, labs were fine. At that time my EKG and echo were abnormal and I saw a cardiologist. Everything checked out ok, to include a nuclear stress test.

Symptoms never got better and worsened several months ago. Now my heart pounds and I have to consciously take deep breaths with minimal exertion. Returns to normal if I rest. The inhaler doesn't help. My neuro said its not likely MS related and I have an appointment with my PCP tomorrow.

I'm wondering if it's weakened intercostal (breathing) muscles related to MS. Does anyone else experience similar related to their MS? (By the way my heart and lungs sound ok but I'm not getting good air movement at the bases of my lungs --I listened with my stethoscope 😊).

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erash i have just been having a talk with my hubby about breathing. About 15 years ago I was having difficulty breathing. To get a deep breath I had to bend over and hold my knees. I went to the chest specialist who xrayed me, did loads of tests, ecg, etc, all came back clear. He said I must have torn my intercostal muscles. I was not diagnosed with ms then. I came to accept it. Anyway in the last couple of months it has reared its ugly head again and I am back to bending over and holding my knees to get a deep breath. I am also full of wind which seems to press against my diaphragm and until I have had a good burp breathing and yawning are more difficult. I cannot eat like I used to. I am now down to 2 meals a day, as I do not feel hungry at all. Hope you find out what's wrong. Keep us posted, blessings Jimeka 🦋 🌈

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jimeka

Thank you for sharing that. It's hard not to attribute every symptom to MS, and based on my self assessment, I'm at a loss for another cause but I don't think I was fully worked up for this last year, so I will let the experts give me their opinions and do more of a work-up.

Be sure you don't have something new or something else going on.

There's something in medicine called Hickam's Dictum which basically says a patient can have multiple causes for a symptom "as many diseases as they damn well please". It's the opposite of Occams Razor (the cause is a single simplest explanation). These old adages seem silly but there's much logic to their foundation.

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Hi Erash, first I want to say thank you for you post the Labdoor.com to check Nutraceutical Products. From there I decided to change my protein source to the one made in Germany Muscle Feast.Its has been proven that whey protein improve immunity and better responses.

Related to your chronic symptoms of asthma and beyond, I use to have severe asthma and recently with raining and cooling weather I started sneezing and coughing.I do not use any medicine(presciption). Night time I put over my front head :i.e.balm: Himalaya Botanique gel,which has only natural oils like eucalyptus, coconut oi, mentha,basil, turmeric,etc. After I spread the gel, I use over my head and neck pure Eucalyptus oil and or Lavander oil. Both ope your lungs immediately. Eucalyptus I have from brand: Plant Therapy; Nature Love and PurebodyNaturals.com-therapeutical grade Eucalyptus oil.

If you fell you do not have enought air, make immediately fresh ground coffee thats open your lungs better than any inhaler. By the way inhaler are not very efficient anyway. Caffeine has same effect like aminophylline, opening the little bronquiolite. Its well proven, I use a lot and to my son when he was young even before bed time.

To expand your lung function, you need to blow couple times a party balloon, like 4times and rest and later if you want, everyday to move your fluids and air intakes.Better if you do stand up(near the chair for dont get dizzy).

Other quick option is VickVaporub that contain Camphor and Eucalyptus., Spread in your chest and back. You can even buy soap with Eucalyptus.

About the heart, I was having some palpitation and digestive problems, then I decide stop taking Curcumin 95 I've been taking for years and also stopped Ginger. No more palpitations.

One more sugestion: PEONY IS FOR ALLERGY, I restarted taking again and I am better now

No noise in my lungs.

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Thanks Miriade

I had never had asthma. I drink more than enough coffee! I've been using an incentive spirometer (the type they give you in the hospital) to exercise my lungs. i do take ginger and tumeric so I will have to give that some thought. I;ve been using both for awhile. It's not so much palpitations. More heart poundig like you would expect if you just ran a sprint. I'll see what the doc says tomorrow but thanks so much for the recommendations.

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My husband was just fitted with a cough assist vest. He cannot get up mucous due to his MS and chest and lung muscles. Seems to be helping. Just a suggestion. Hope you are feeling better soon

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My MS HUG caused me to feel great stress trying to breathe. I would question your Neuro to further check your intercostals being weakened. My HUG goes away after sometimes months of (scary and disabling) symptoms, I hope you get relief soon

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thank you Hidden

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Erash: I sure hope they find out what is going on. Prayers for you 🙏!!

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erash , I am so sorry you are going through this. I, too, have been going through the same...tough time breathing, heart pounding. My PCP said it was asthma, and prescribed me an inhaler, but I'm not sure it is helping, or just the fact that it forces me to sit down and take long slow breaths is what helps me. I've often wondered if it was the MS causing a weakness in the breathing muscles, but remind myself that not every little symptom is MS related. . Good luck at your doctor's appointment, and keep us posted on what you discover. Blessings, Sandy

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Hi Erash, sorry to hear this : (

I have allergic asthma ( pollen and fungus ) and my steroid inhaler helps greatly, when I remember to take it on time lol !

Just a thought below ?

dysautonomiainternational.o...

I get mad palps and a buzzing chest after meals - strange stuff this neuro nonsense ! Hope you find some answers soon. Angela x

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erash I’m sorry about these troublesome symptoms, and wish I had an answer. When I had the possible CIS years ago, I had a period of time in which I had to consciously think about breathing. I would awaken many times during the night with a gasp as though I had sleep apnea. There was no pounding of the heart, but the breathing thing scared me. It lasted only a few days, but I can’t help but think it is related to MS. I’ve never had asthma either.

I’m so glad you are having this investigated more thoroughly and pray you get answers quickly. You’ll keep us posted, won’t you?

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Thanks all for your feedback

My doc thinks it might be reflux affecting my larynx.

Possible and I will give the treatment a try and see what happens. At least that's more fixable than MS issues and not a serious heart or lung problem.

So cutting back on my bubbly water and ☕️And 🍫

Oh my!

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Have you had a pulm consult or pulm function testing? I know of one person who has worsening lung function but it's believed to be caused by his MS medication and last I heard he wasn't willing to stop taking it.

Scary!

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kdali agree with you 👍

We discussed a pft (that was my inclination) but we agreed I'd purchase a peak flow meter and monitor myself, add a short course ppi and albuterol.

My o2sat was 99% in the office (of course I wasn't exerting myself and had no symptoms at the time)

When you look relatively healthy, health care providers assume it must be a relatively benign problem (I'm guilty of doing that to patients too and of course I'd prefer benign for myself )

I know enough to not let it go if there's no improvement...and it's been occurring for @1 yr so I can likely afford to try her plan...

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I hope it's benign also, but I'd feel better hearing that from a specialist. The person I mentioned now has moderate obstructive airway disease, never smoked, was cycling a few years ago. They also said it wasn't MS causing it. He had two failed pft and no longer responds to albuterol.

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kdali

His was due to MS meds rather than ms?

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That's the theory, and he was taking Gilenya for over 5yrs. I invited him and his family to this chat so they could ask if anyone else with MS and/or on G had breathing problems. I don't know why everyone is so quick to say "that's not MS"?

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kdali

I think most of the research shows breathing problems as an advanced/end stage MS symptom.

Frankly, they waffle from appointment to appointment about whether a symptom like my transient hearing loss is MS related with me. I am also cautious. It's so easy to assume every symptom is MS.

How's V doing?

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I don't even mention my hearing weirdness because it's "not MS".

She's great! Just turned two months old and will have her check up and some shots tomorrow. The hemangiomas are improving and she will start PT for her neck next week. We had our first road trip over the weekend and she met lots of cousins and two great grandparents 😍😍

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kdali

2 months! Hard to believe. Glad she's doing well and hope u r too

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I agree! Only one more month of having a "newborn", and she's already doing so much growing, physically and socially 😭

I think I'm doing well! The MS is creeping back in, but I've made it 9 weeks without anything crazy 🎉

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Erase. Your symptoms (&everyone elses) take my breath away, no pun. I have shyed away from MS groups for awhile. However they always affirm the human spirit and common problems. I have learned a lot and admire all dealing with this disease.

You seem to be on top of a lot of info, I hope it is not MS, but most importantly other than resolving. I hope you find a doctor who documents his opinion. I hope you find a specislist who can put your mind at rest. I think there is a lot of guessing but I prefer facts to support. However easier said than done.

My prayers for your health and answers.

Bonnie

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erash, I've had two occasions where I've been unable to breath without coughing. Both times were in bed, I was asleep, and the inability to draw a breath woke me up. I felt like I had an elephant sitting on my chest. The first time was about a year after my first MS symptom. The second was about 2 years ago. I ended up going to the ER the next morning after calling my PCP's office, and being told to go. I did NOT have a heart attack. In fact, all tests came back perfectly normal with the exception of a 'mild electrical problem,' and the recommendation to see a cardiologist. I didn't. But my neuro has said she feels my autonomic system is affected by the MS. I've just figured that, along with another strange and thankfully rare symptom (my neuro calls it 'man in a box'), are probably wierd MS things. I hope your doctor can help you determine your breathing issues and get it resolved. 💕

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I have had exactly the same problem and after some chest X-rays and breathing tests it was determined that it was from my MS. I can't fill my lungs, and I can't empty my bladder! Oh, the irony.

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Debs5997

Me too...bladder issues.

So they are saying it's not my MS causing the breathing because I can still walk so I'm not "bad enough" to have my breathing affected.

Is your breathing disproportionate with your other symptoms?

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Oh erash, it's Fancy1959. Here's my usual longess answer. I am so very sorry you're having such difficulty with your breathing. I am fortunate not to have ever had that issue on a regular basis. Only when I get my allergies up in arms if I get around mildew or mold or if I get sick. Please keep us informed and stay on top of this. Someone somewhere someplace has to be able to find a solution to help you. Have you ever tried distracting yourself? Sometimes when we focus on an issue were having trouble with especially like your breathing, which I've had trouble with breathing in my spasms it makes it worse when you realize you can't breathe properly. I found that the best thing I could do was distract myself and try something different to rein in my breathing when my spasms hit and no air was being circulated through my esophagus. Then the next thing I would focus on would be relaxing and I know how difficult that can be when you're choking and unable to move air but it is something that will make a huge difference.

When my sons were young they used to have breathing attacks in the middle of the night if they got sick . They got a touch of moms asthma I believe. We would wake up to the sound of our son's gasping for breath and originally we would rush them to the hospital and have them do breathing treatments at the hospital. This progressed from just one or two a winter, to pretty continual winter activities of three or four every winter depending on if they were sick. I believe most of their respiratory problems were upper respiratory issues not deep lung issues like you're having. However, I learn a golden trick to help their episodes pass quickly without involving the ER. I would crused up ice cubes, climb in one of our rocker recliners after inserting one of their favorite kid videos into the VCR, turn on the VCR and start feeding them ice chips to suck on. I bet you within 5 minutes I have there breathing 50% improved and within 25 to 30 minutes they were sound asleep in my arms in the rocking chair. Many a night I spent sleeping in the chair with a baby in my arms and an afgan wrapped around us both.

Have you thought of doing yoga where they practice deep breathing and where you learn to relax and control your breathing and body? I'm sure you have but it's just another idea. I have heard nothing but good things about the benefits of yoga for stretching muscles, working on balance, and breathing. Sending you a big hug through this Electronic Connection along with many prayers and positive thoughts. Take care of yourself.

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Thanks Fancy1959

I do yoga and daily meditation. The shortness of breath is with any exertion so it does get better if I sit quietly. I've wondered if it may have a psychogenic basis but it can occur during mundane house tasks so I don't think that's the cause--granted stress can worsen it.

So the good thing is the albuterol inhaler the doc gave me is giving wonderful relief!!!

And I'm working on the lifestyle changes (while I don't take NSAIDS like ibuprofen I do take a lot of vitamins/supplements that can irritate my gut and increase reflux. ) And I do eat too late at night.

So b/w the inhaler, the Protonix and changing my behavior, I'm hoping this will improve :)

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Erash, it's Fancy1959. I too will pray and send positive thoughts your way that you can change your breathing issues between the doctor's medication and your lifestyle and eating Behavior. If anyone deserves to have smooth sailing it is you because you are rock in this chat room.

On a different note I just have a thought could your shortness of breath be caused by things that are unrelated to MS. Before I had my surgery on my liver due to my rare genetic polycystic liver disease I had cyst pressing on my stomach which then pushed the stomach into the diaphragm and I had some issues with breathing similar to what you're describing. If it doesn't resolve soon please talk to your primary care physician and see if they can run some secondary tests to see what's up with your diaphragm area to see if anything is pressing on it to cause your breathing problems.

Please let us know your diagnosis on this issue as it progresses. Please Don't Let It Go On because we love you and you're too important to us to take any chances with your health. I'm sending you a big electronic hug through this connection and hoping that you are blessed with good results soon. Fancy

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thank you Fancy1959 for your prayers and thoughts

both my Neuro and PCP seem to think it's unrelated to MS

Believe me...if it's not improving I will pursue further evaluation and testing. In the mean time, I think it's worthwhile to try my PCPs suggestions :)

My oxygenation is really very good with and without exertion. I purchased a pulse oximeter and I'm checking. So can't be too critical. But I do feel somethings going on...tight throat? have to work too hard to take a deep breath...

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erash I have also read that respiratory issues seem to be common with MS, the reason is unclear; and I haven't seen anything that indicates this is only true with "advanced" MS, whatever that is. If that's the case I must be getting pretty advanced myself. Great. For about a year now I have had some low level congestion, basically just mucous & a little trouble clearing my lungs which is not typical for me. Nothing serious but annoying. I was thinking that being more sedentary than I am used to may be part of it. I think what you say about weakness in certain breathing muscles makes sense.

I also practice yoga and I regard breathing as an essential part of this. I treat breathing as an exercise in itself & I think it helps with the lungs. Good luck!

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BillD999

Thanks!

I think there's a lot of assumptions about MS symptoms, what is, isn't , and might be associated and because everyone experiences this disease differently, they just really don't know. 🙁

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