MS and Breathing Disorders

[Sarahsmom46]

I got quite a surprise when I had my Pulmonary Function Tests last week.  My numbers were terrible!  When we went over how much they dropped, from the 100s to the low 60s, in the past 5 years.  Well, not only have my numbers dropped, but now I have what they call a "restrictive" pattern meaning you have more trouble getting air into your lungs (breathing in) than getting air out.  Weird.  

The neurologist told me that neuromuscular disorders like MS can cause breathing problems in people with MS.  Has anyone ever heard of that before or experienced it yourselves?  I thought I was just having the MS Hug all the time that was causing my breathing problems.  But the neuro said that my low numbers were just a combination of a few other things too like uncontrolled asthma (so-called asthma as I don't have classic asthma) and needing to exercise more, but geez, how did these numbers get so low?

Anyway, I just wanted to share that with you guys.  So, if you are not breathing as well as you used to and don't have a history of asthma, you might want to mention it to your doctor next time you see him/her.  Maybe there's something that could help with it.

Julie

[saveone]

I too just had a PFT.  I ended up with flovent and cumivent.  I found this wierd because my numbers were "pretty normal"  I didn't have the sense to ask what they were but I will get a copy of the report.  I was just waiting on everything to get in before I did, so I could get the copies of the sleep test, lung x-ray and PFT at the same time.  

I didn't think I was having any trouble breathing.  I can exercise without becoming short of breath since the anemia is under control.  He wants me to use the inhalers for one month then come back and tell him what I think.  He said the x-ray showed my lungs were hyper-inflated (I saw that report).  Since I began using the inhalers I can tell a difference.  I am breathing deeper.  He wanted to see if getting more air would help with the fatigue.  My fatigue had not been a problem for at least 2 weeks before I saw him this last time, so I don't think that is related.

When I went for my PFT they tried to check my blood gases but couldn't get a draw.  They went in at my wrists.  First the right, man that hurt.  Then they had to give up.  They were going in again and I said, "not in the same one you aren't"  So he tried the left.  Still no luck.  I told him enough just write down I refuse to go further.  This lady came in and she asked him if he wanted her to try.  I said, "Uh, no I don't".  That was that.  So I don't know how my blood gases are but I do know my wrists were bruised and sore for a few days.

It funny how one of us will be going through something without realizing others on here are experiencing the same.  

Oh yea, I have never experienced the MS hug unless that was what I had several years ago when I thought I was suffocating.  I thought I had developed asthma but I never had an attack like that again.  I thought I was going to have to go to the ER.  

peace, love and joy

terry

[meg321]

I agree it was a perfect time for your post...

I have never taken meds for asthma, I was born with asthma but it improved after we moved to CA and it has realy not been bad or so i thought but I have had this breathing problem for a number of years now.  They have just continued to worsen.  I did have a test once about a yr ago and i dont remember what came out of it. And noone seems to be concerned but then i have had so many things going on.

I need to get that checked out, its on the top of my list.

hugs, meg

[MsWobbles]

Wow - you could not have posted this concern at a better time!!  Lately I've been very concerned about my breathing - mainly at night.  I use a self-adjusting CPAP at night that is like a BiPAP in that it gives some exhalation relief (you exhale against a lower pressure and the machine adjusts the incoming inhalation pressure according to need).

For the past week or so I have been having episodes where I wake up against higher incoming pressures like 14 instead of the usual 8 or 9.  I feel like I'm drowning in air.  I feel so short of breath, but when I check my O2 saturation, it is in the normal range.  I am aware that the O2 saturation can appear normal while other blood gas numbers like pCO2, pO2 etc. can be off the wall. I've checked out okay for cardiac and pulmonary and I don't have asthma or panic disorder.   One time in my pulmonologist's office, his technician drew arterial blood gases on me where the O2 sat was normal yet many of the other numbers were terrible!!  He dismissed it as likely having been a venous, rather than arterial sample, yet the numbers truly expressed the horrible way I felt that day.

The reason I say you posted your breathing concern at the right time for me was that I was very much encouraged seeing that people with MS can have such breathing symptoms.  I know that difficulty with breathing, especially at night, is a major symptom of ALS and I was beginning to go back to thinking that what I have been experiencing might really be ALS.  In people with ALS, their pulmonary function test numbers keep going down lower and lower -  they have to monitor their PFTs closely.  Initially, they require BiPAP -  first only at night, then during both day and night, and then eventually  a respirator when they can no longer breathe for themselves.  ALS and MS have such similar symptoms that some people who really have ALS are initially diagnosed as having MS.  If you have lesions on MRI, though, that is a clincher that you have MS.  ALS people's MRIs are always negative.  I've never heard of anyone having both ALS and MS - but I guess it could be possible (what a nightmare!).  In people with ALS, their breathing issues begin as more trouble exhaling than inhaling (unlike your situation) and they end up with CO2 retention.

Your post puts me back in an MS mode.  Come to think of it, I have been feeling tightness around my thorax, but I wasn't thinking MS kiss at all.  I like that idea way better!  MS kiss sounds good to me now (even though it's no picnic and isn't something I would ever choose!).  I also think it's time I had another PFT done just for comparison with my last one.

Again, thanks for getting my mind back on the MS track!!

WAF

[steph74]

I had PF tests to dx exercise induced asthma several years ago.  The tests came back "normal" except for one test that indicated "poor neuromuscular control or pt not trying."  Since I was certainly trying, I'm pretty sure that's related.  I haven't had the tests repeated since then, but I do think my breathing has become slightly worse, though nothing terrible, luckily.

I'm undx, and I did mention it to my neuro and she wrote it down.  (Sometimes I wish drs would tell me what they think of the sx I report.  I never know what is related or not, because they don't generally say.)  I have also read that this is a fairly common (though not well know or dx) sx of MS.  

Stephanie

[Sarahsmom46]

I'm back on asthma drugs and will get another PFT in a couple months to see how much I've improved.  I'm in the 60s right now, and our goal is to get me into the 70s. But the doctor said I will not likely ever get over the 100 mark again.  

Are you taking asthma meds?

Julie

[meg321]

You got my attention, i have had a breathing problem for a long time.  And I do have asthma but I am always told it is not from the MS.  I am right now in the process of figuring out what to do.  My breathing gets quite severe at times ..its mild to severe.

Hopefully they can help with it,  i think it may also be a factor in the fatigue.

What are they going to do to help you?

thanks, meg

[Sarahsmom46]

These were what they call "full" pulmonary function tests and that included several typical breathing in and holding and breathing out as fast as you can tests.  They also rechecked my breathing after a bronchodilator to see if my numbers inproved.

I just read an article on the effects of pulmonary function on patients with neuromuscular disease like MS.  I still don't quite understand what I was reading, but it sounds like it is fairly common in MS.  Patients don't complain about the breathing issues because they don't see them as a big deal.  That was me for sure.  I had to see my numbers to believe it.

[Sarahsmom46]

I think the exercise is what I need to help loosen that area up. What types of exercises do you do that help?  I know you are quite the walker.

Julie

[HVAC]

Julie,
  I have an asthma where I don't wheeze. I feel like a elephant is stepping on my chest and sometimes a choke to the point of turning red. The cartilidge around my ribs is also always inflammed. I can't stand anything touching me.  Ultrasounds are excruciating. Exercise was really hard but it is helping now.

Alex

[rendean]

Sorry to hear about the low numbers on the PFTs. How long have you had asthma? Never heard of low numbers due to MS but I guess it makes sense if that particular area has nerve damage.

What are they going to do to treat this?

Take care,
Ren

[jensequitur]

I have mentioned it to my doctor, but she wasn't able to tell me much.  Sometimes I just feel short of breath.  This doesn't happen when I work out, just when I'm already feeling symptomatic.  

What did the pulmonary function tests involve?