SOB and MS

[marti]

Can anyone tell me anything about possible shortness of breath associated with MS?

I've had heart tests that seem to show everything normal. But I've always, always had trouble getting a deep breath and now coming up hills or stairs makes me puff a little. Probably just getting older (61), but I'd like to hear about this.

Thanks

[TechDad]

Hey Marti,

It is usually called "banding" and sadly there is nothing I have found to stop it besides to rest and catch my breath. There is a device I use that has helped strengthen my diaphragm muscle which makes breathing easier and seems to help - it is called "BreathBooster" and looks like a boxer's bite guard with a train whistle built into it. It looks silly but it does give the 'ol lungs and related muscles a great workout. I also occasionally use a nebulizer and assorted meds to help.

[rdmc]

Hey Marti,

I've had SOB from time to time. Sometimes I think it's a result of deconditioning...I don't get a lot of aerobic exercise , and if I'm doing anything more strenuous than normal, like "trying" to walk up stairs, or housework for longer than normal, that's what I chalk it up to.

Sometimes I attribute it to just plain old fatigue. I've ended up in a doctor's office huffing and puffing from the energy I had to expend to just get there. The shower, getting dressed, getting to the car, getting into the office, etc. That, too, probably could be classified under deconditioning, but it is what it is.

The hug can do it, but when I have it with the hug, I know it's coming from the hug because I feel the tightness.

I do metered breathing exercises, and I also keep around a spirometer (from one of my hospital visits) and practice inhaling deeply. Don't think that helps with the SOB, but it's good for the lungs.

[Thomas Jackson]

Hello Marti, I'm 58 years old and you are not alone on this one. Stairs and inclines do it to me.

[marti]

Ok TechDad... where do you get this breath booster?

And RD.. I'm sure you are right about being out of condition. I used to walk the treadmill every couple of days until I had some surgery which I never recovered from. So, yes.. I am out of shape. I've always been healthy as a horse so it's frustrating to see myself decline like this.

My thyroid went crazy after the surgery and I now have Graves disease. So... palpitations are in the mix. Sometimes they just take my breath away.

Thanks everyone.

[Ga dancer]

Wow, I was just coming on to post this very question. I have had all kinds of tests, pulmonary function tests indicate poor diffusion and severe restriction. I had a stress thallium and my heart is okay, VQ scan and CT show not only nothing abnormal but I have healthy lung tissue.

I am still very SOB with minimal exertion. They did a Cardiopulmonary exercise test where you wear all this measurement gear on your head and ride a bike and a computer analyzes the results. You do a pulmonary function test before and after.

I had to stop the test before conclusion because my thighs just wouldn't work and were hurting bad with the biking. The doctor finally called me with the results - my body uses so much energy walking that it makes me feel short of breath. I have minimal exercise induced asthma and was prescribed an Albuterol inhaler, but nothing else in their bag of tricks will help me feel less short of breath.

Thankfully, I was given the results over the phone. I hung up and cried for several hours but I am now ready to move on and get over it. I guess I just didn't expect pulmonary effects.

Since my lung tissue is healthy, I will keep my organ donor designation on my driver's license.

[marti]

Dancer.. I had a doctor years ago who suspected some kind of asthma but the pulmonary function tests were ok. But he really thought there was some restrictive thing going on. This was before my MS dx. It amazes me how much energy we MS-ers "waste" or use up doing simple things. Sounds like you went thru a lot of tests.

My SOB isn't very bad, but I get a kind of catch in my chest that takes my breath away for a couple seconds. This really scares me. No one has any answers. In your case (maybe all of ours) it sounds like our organs are fine, but the MS is causing some unexplainable symptoms.

[lisa1014]

Ok first of all it took me a minute because when I think of SOB it is not shortness of breath that comes to mind. Any I have been treated for asthma for years but I still feel like I cannot catch my breath or when I breath deep it is painful. At my last appointment my asthma test said my breathing was better than ever but I still have this pain and SOB. I guess now I can blame this on my MS too.

[TechDad]

Hey Marti,

I picked mine up on Amazon (since shopping locally has become such a chore I buy almost everything on there). Search for "Mabis Breath Booster" Hope it helps.

[mercadies25]

I too suffer from this SOB. I, on top of having MS have HYPOTHYRIODISM wich adds to the SOB. I used to be very active but with the fatigue of both of these diseases doing housework, walking the dogs, going to the car or anything else makes me short of breath. I also have had all the test-heart and lungs etc... everything else ok for now. I guess it's something we have to accept, but we are not alone in this misery!!!

[marti]

Mercadies... I am now hypothyroid too. I have Graves disease and had ablation to kill the thyroid. My labs are showing I am getting a little too much hormone, so I don't know where I am. It's been a struggle. I didn't know about the SOB and thyroidism. Thanks.

[Nanobaby]

I too thought that SOB stood for something else.

I find that I am not able to deep breathe the way I used to, which sucks because I can't sing the way I used to, either.

[marti]

Can any of you describe your SOB? I'm not really sure that's what I'm experiencing. I get a little winded walking across the room ... sometimes. Other times I feel a little "catch" in my chest that takes my breath away. Sometimes it's just plain tiredness. I'm not really panting or gasping.

This started when my thyroid went hyper and I was having lots of palpitations. Then we killed the old thyroid and I went a little hypo, but still have the same symptoms.

I've had the HUG for years... on and off. I think that's what is causing this feeling of a kind of SOB now. Of course, anxiety comes into play with all these autoimmune diseases. It's all kind of muddy.

I just keep researching and looking for possible answers (since the doctors don't bother) and I believe there is something we are all missing that can be fixed.

Sorry to sound so desperate. But I am.

Thanks to all of you.

[BLUZ]

I am in the middle of my second round of testing for SOB. Back in 2009 doctor at Cleveland Clinic said the muscles in my diaphragm was prohibiting me from taking a deep cleansing breathe caused by muscle constriction due to MS.

Fast forward to 2012 ~ appt. June 8th with doc at Cleveland Clinic as SOB is more often and gone from mild to moderate. Hopeful for some help/answers.

The kicker, my local neuro refuses to believe the MS is causing my SOB.

[TechDad]

Hey again Marti,

I feel it in my chest and with the air volume that I inhale/exhale. It feels like once I get to a certain point on the inhale the muscles directly in the front of my ribs tighten up like a giant 20 inch wide elastic band is strapped to me. It is not painful - just restrictive.

On the exhale it feels like I am "huffing" the air out quickly sort of like blowing out a candle. I breath with my diaphram (when your belly moves up and down) and not just my chest (when only your chest moves) like I have always been told is the proper way to do it (not sure there really is a wrong way to breath...so long as we are breathing).

It also physically feels like my lungs are full of air and they do not want to take more in - even though if I force myself I can continue to inhale for a what seems like another 60% of lung volume. It feels like my body only wants to take short breaths. I have used one of those air volume measurement things that you blow into and it shows that unless I force air in I am not even close to using my full lung capacity.

My ex-Neuro has told me it is due to the lesions at the brain stem and is very common in MS (along with all my other brain stem lesion induced symptoms...oh joy)