Shortness of breath - seeing the PCP!

[jensequitur]

This isn't the first time I've asked the doctor about my shortness of breath, but it's the first time I've actually scheduled an appointment for that reason.  It seems to be worse in the morning, and gets better during the day - like many of my MS symptoms.  I'm not going to try and prejudice her against it being a physicial symptom, rather than a neurological one, as we need to eliminate any actual physical cause for my shortness of breath.

The About.com article indicated that if you're having shortness of breath, you should be evaluated for pulmonary function, as well as doing an oximetry test - testing your blood for its oxygen content.  

My heart rate also shoots up for no reason - 90 bpm or so, sometimes as high as 100 bpm.  That's a weird one.

I know that when I exercise, my respiration and bpm are at normal levels, so I'm at a loss for the cause of this.

Is there anything else I need to be asking for?  I know at least one person on this forum has had their pulmonary function evaluated...

[sllowe]

Good luck at the Dr., Jens.  i don't know what else to ask for but sure hope you find out what is going on.

Rena has been to the pulmonologist I believe.  Maybe she'll see this.

ttys,
shell

[saveone]

I have had a lung function test.  I also had a lung x-ray and they tried to draw blood gases.  The blood gases was a failure, they couldn't draw the blood because they couldn't locate the vein.  That was painful.  The pulmonologist also did the sleep study

Other than that I don't know of anything else they do.

I just wanted to mention when they did my endoscopy they found I had a hiatal hernia.  Being me I had to start searching for information on the web.

I mention this because symptoms included shortness of breath, chest pain in some cases, GERD and some others.  I know you have the acid reflux and now you mention the shortness of breath.  

This may not apply to you at all but I thought I would mention it.

Lots of luck,

terry

[biowham]

I get a sudden shortness of breath with squeezing in my chest, and since I started a hardcore anti-GERD regiment, it's gone away almost entirely; happens only about once a week now, where it used to happen several times a day.

Also, I have a thing where I'll just be sitting there, breathing like a regular person, and I'll have to take a deep breath, almost like the kind after you've cried a lot, like a big, deep sigh. I know others have posted about that here.

Anyway...the GERD therapies have done wonders for the shortness of breath but have not stopped the "sighing" thing. I think those must be two separate things: the former was GERD, but I think the latter is lungs.

I'm interested to see what your doc thinks and what sorts of tests they run and what they find out.

Bio

[biowham]

Regimen, not regiment. I doubt I've got an army down there, fighting acid...but you never know.

Bio

[saveone]

LOL  Bio your brain probably thinks so :<)

[meg321]

Its amazing how much it  sounds  like we are talking about each other, the symptoms are so similar

I just had the pulmonary function test.  I have been havig almost all the same thing you all mention for years. I would always mention it to DR's too and if they even paid attention and did x-rays and PFT, nothing seen to get their attention.  

This time my Dr paid attention especially when I arrived in her office not being able to catch a breath. Anyway, the test came back as COPD, i do asthma so we will see what the pulmonologist has to say.

I have had acid refux for years also and take meds for it.

Also, once when tested, they said I had a swallowing problem, can't
remember the name right now.

Its still a mystery to me, all of this stuff.

good luck jensequitur, and i hope i catch your next post.

hugs, mg

[Sarahsmom46]

I brought up a similar issue with my neurologist last week. I mentioned to him that my pulmonary function  tests show that I have had a significant drop in my breathing tests over the past few years.  My numbers dropped over 40 points.  I asked if there could be a neurological component to the breathing issues.  He said that it is not likely related to MS unless there were lesions in the brainstem, then he backtracked on that.  He did say there could be diaphram weakness that could cause this.  

You need to have a full pulmonary workup to see what else could be going on, adult-onset asthma, allergies you aren't aware of, possible heart issue. Rule all those out and then look at the neuromuscular possibilities.  

For some reason your lungs are working harder than normal and that definitely needs attention.  Good for you that you're seeing the doctor.  Get a pulmonary referral from him/her before you leave.  

Take care.

Julie

[sandie490]

Hey Jen,

Have you ever had a feeling of having trouble breathing or trying to get breath in, but it's hard to when you go out into the hot weather or in the sun? I'm not dx are you?   Sandie

[jensequitur]

I was diagnosed in July 2007, but we were pretty sure by the end of 2006 that something was going on!

And yes, when I'm overheated, the problem gets worse.  I can be doing something in the heat, and I'll have to stop just to take a breather, because it feels like I'm just not getting enough air.  Sometimes it feels like I have to pant a little bit.  Crazy.

Julie, I'm thinking that it's diaphragm weakness, but you're absolutely right - I need to be fully examined to make sure it's not something else.  That deep sobbing sigh that Biowham talks about - I've got that too.

Biowham, could it be possible that your GERD is setting off an MS hug?  I get esophageal spasms (fortunately, not recently) and they seem to be connected to my acid reflux.

[biowham]

Jen, I don't know. I did a barium swallow, and it was normal, which didn't surprise me because I wasn't having any of these symptoms at the time. It did occur to me that the GERD might be setting off spasms, though. And now that it's really controlled, I just don't get those feelings of a sudden loss of breath. I do still have that deep sighing breathing that I need to do, and I've noticed when I sing in church that I almost pass out--like really almost faint--from shortness of breath if I use my full voice. Obviously, I pretty much avoid doing that. It makes me VERY dizzy and the world starts to go black.

Let us know what your doc says.

Bio

[sandie490]

Hey Jen

Yeah, I'm not dx, but I have been getting the sobbing like sigh now for about a and a half. Started out once in a while, now all the time! The other day when I went into the hot sun, it almost felt like something was sitting on my chest, it was hard to breath.  I have asthma, and it wasn't like that, infact I have never felt that before.  I have been feeling this over whelming fatigue that encompasses everything, affects everything.  Every little thing I physically do is an effort, like a total complete weakness comes over me.  But that was the first time I ever felt the breathing problem in the heat.  I've had my heart checked, and they all say everthings good.  My blood sugar is under control, so I am really starting to think MS.   As soon as I move, that's were I am going to an MS specialist.  Like I said in another post, I have like 95% of the symptoms, and I keep getting new ones every week, so I need to do this, and hopefully I get a neuro that will either be able diagnose me.  See when my sister was diagnosed she had the bad ON attack, vertigo, and I think 1 lesion in the brain. bt he ran all the other tests, after he told her MS.   I also started with the spasciticty this weekend,not cool.   Thanks guys  Sandie

[jensequitur]

In my experience, asthma always manifests as a tightness in the chest, combined with uncontrollable coughing.  I've never had asthma - I just know other people with the disease.  I should say that I've never been diagnosed with asthma!  This experience is more like I'm just not getting enough air into my system, like my lungs aren't inflating properly, or like they're not absorbing the air that I'm breathing.

Good luck, Sandie!  As you say, spasticity is not cool!

[CityChick1985]

I went to the ER last week from having such severe shortness of breath.  It lasted roughly 5 days and on the 2nd day I couldnt take it anymore and went to the ER where they took more blood from me, gave me a breathing treatment, gave me 2 liters IV and took chest Xrays and an EKG.  I was sent home and given a diagnosis of "unspecified shortness of breathing" It didn't improve until yesterday and then I broke out in a rash all over myback, still have the rash, using witch hazel and cortizone cream for that.

I haven't been given ANY diagnosis for any of the symptoms I've been having for the past couple months, but my rheumatologist said could be MS, Ihave an appt with my primary dr on thursday and he has to follow up with the ER dr on my THS tests because they werent ready when they discharged me.

Regardless, it's really scary when you feel like you can't breath.

I'll keep you in my thoughts.

[shoshin]

Well, I have had quite a few pulmonary function tests since I've been in the FTY720/fingolimod clinical trial (apparently it does something funny to mouse lungs). I find them somewhat challenging since I never seem to be able to breath as hard or as long as they want me to. I only recently got my results when I requested my recent medical records (well, most of them--they always seem to lose something).

To my surprise, they all say things like "lower limits of normal" and "mild reductions in both the negative inspiratory force and positive expiratory force." They then go on to say this "could be due to respiratory muscle weakness consistent with patient's previous diagnosis of MS." However, I apparently also have some problem with "elastic recoil" which can't be accounted for by the MS. One of these reports mentions "mild restrictive lung disease with increased lung elastic recoil."

However, the later reports seem to show some improvement (maybe the drug is helping?). On the last one I have, a number of things are listed as normal or within normal limits and in a more positive spin, it is noted that "respiratory muscle strength is not impaired substantially."

I took the results to my PCP last week and he didn't seem too concerned. Apparently, the numbers aren't low enough for him to worry so I've decided not to worry, either, for the time being.

However, despite the fact that the numbers are seemingly better, I am having more sensations of pressure or tightness in my chest and also sometimes of anxiety (it almost seems like I get the physical sensation of anxiety first, which is then often followed by anxious thoughts). I also get this feeling sometimes like my heart is beating too loudly. Not particularly fast, just loud. Especially when I lie down to go to sleep so maybe I'm just getting hypersensitive.

I sometimes get shortness of breath and I also get that deep, ragged, sobbing thing periodically.

[I do  wish they would tell me these thing. A couple of neuros have raved to me about the great medical care you supposedly get in these trials, but what is the point if they never tell you anything. So far as I can tell, all I get are a whole bunch of time-consuming tests that I wouldn't have to have if I weren't in the trial and a brief neuro exam with a neuro who I can't talk to about my symptoms. I guess I get a free brain MRI every six months, but since nothing particularly ever seems to show up, I'm not sure that's a good exchange for the time spent in the MRI machine. My neuro said I didn't need regular exams while I'm in the trial so I sometimes feel a bit marooned. On the other hand, I suppose there really isn't much the neuros can do in the end anyway. /rant]

Sorry, got off track there. I hope you get the pulmonary function and oximetry tests and at least figure out what's going on and hopefully what you can do about it.

sho

[Lulu54]

Thanks sho for the explanation of the trials of being in a trial.  Let me tell you thanks for volunteering your time - I hope the frustration level subsides and you are able to stick it out to the trial's conclusion.  

I have been searching for atrial to participate in and am ineligible because of my age in most of them.  I thought I found one last week, but was told I haven't exhausted all other treatment options.  jeeesh!  

I want to help too!
Lulu

ps sorry for hijacking this thread Jen.

[jensequitur]

I know what you mean about feeling marooned!  Every time I come to the neuro with a new symptom, he either schedules me for an MRI (usually too low of a Tesla to do any good!) or pats me on the head and says "Hang in there."

[jensequitur]

Not at all, chica!  

[Deb61]

I found a very good web site that talks about shortness of breath in MS which lists muscle weakness, side of effects of spasticity medicinces, malfunction of sensory information to the brain, etc.  Check it out at:

http://ms.about.com/od/signssymptoms/a/respiratory_gen.htm

I hope you're tolerating the Texas heat!  I'm just back from Italy and even this cool spell is hard to take!

Deb

[jensequitur]

Hey, Deb!

That article is one of the main reasons I decided to investigate my symptoms.  If it's neurological, then I'll just have to live with it - but if it's caused by something I can fix, well then great!

And this Texas heat is just dreadful.  I suppose I shouldn't complain about 89 degrees, considering the 102 from last week, but it's still really stifling.

[jensequitur]

Oh yeah, and just came back from the PCP.  I'm scheduled with a pulmonologist for the shortness of breath, and a vascular surgeon for the possible blood clot in the left leg.  The doc called it 'venous insufficiency' which makes sense to me.  Whatever's going on, the blood isn't circulating properly in the leg.  I'm active right now, so it's less of a danger, but if I end up being inactive because of weakness or balance issues, then there's a possibility that it could become a serious problem.

[shoshin]

Deb: Thanks for the link to that article. I am on a muscle relaxant, have all sorts of sensory problems so it wouldn't surprise me if my lungs were messed up, too, and according to the pulmonary function tests I have respiratory muscle weakness as well.

It's interesting that they say there are exercises that can help. Anybody know what they are? I'm not even sure how I'd do aerobic exercise anymore as I can neither walk fast enough nor far enough, don't like to swim (not sure I could still do that, either), and am at a loss for other ideas. I'm going to physical therapy again so maybe they'll have some ideas.

The way these pulmonary function test results are reported, they give an actual value (volume or speed), a predicted value (based on your age, sex, height, weight, etc.--interestingly, they seem to think I'm a couple inches taller than I actually am so I wonder how reliable these results really are), and the percentage of the predicted value that you achieved. Around 100% is good, but it seems that as low as 80% is generally considered normal. Most of mine are not outside or much outside that range, but the respiratory muscle strength section definitely is. On the first test, both the positive expiratory force and the negative inspiratory force were at 53-54%, but after the first test, the inspiratory force was always over 100% while the expiratory force remains around 55%. Dunno what that means.

Lulu: Thanks for the encouragement. I'm really in the trail for selfish reasons (neuros keep telling me the standard DMDs aren't likely to work for me as I don't have prominent relapses) despite the nontrivial drawbacks.

Jen: Glad to hear you're scheduled to see a pulmonologist and hope something useful actually comes of it.

sho

[Deb61]

My sister's left foot turns black when she places her foot down on the ground and is unable to bear weight on it.  MS sure can cause some unexpected problems that are more complex than I can understand.  

Let us know how your appointment goes with the specialists.  I hope you don't have something serious going on . . .