Anyone Ever Had A Cardiopulmonary Exercise Test?

[Gemma]

Hi, did anyone ever have this test? My pulmonologist ordered it when I complained of shortness of breath while doing daily taks. He call me with results and said that cardio and pulmonary parts are all fine, but there is a problem with muscle weakness like deconditionin or he said maybe it could be myastenia gravis.

So today i picked up my results and this is what it says: an exercise limitation is evidenced by a reduced peak VCO2. With normal cardiac and respiratory reserve suggest deconditioning or myopathy.

Could this be due to POTS or could I really have myopathy. I dont know if I should investigate this further, ir this is just one of those things that comes with POTS.

[dkd]

Was this a treadmill test? I've had a stress test and pulmonary function tests, but not at the same time. My first pulmonary test said "suggestive of neuromuscular disease" because I had some air trapping. My second pulmonary test was normal, so the pulmo said I was ok. I still have shortness of breath when I do just about anything. So, I don't feel ok

My neuro ordered a test for MG, but it was negative. I think I might have something neuromuscular, but I haven't investigated it any further. The last few days, I've felt like my diaphragm is in a spasm, really tight. I don't know which doc to go to so I sit here not going to any of them.

Did your doc recommend what to do??

[Gemma]

This is not pulmonary test and not treadmill stress test. This is cardiopulmonary test where they put you on a bike, clip your nose, put on oxygen mask and you ride the stationary bike. It was so hard for me to do, but my cardio and pulmonary results are fine, but shows some muscle fatigue problem or something.

[Gemma]

What test did you have for MG, blood work?

[kayjay]

Yes I've had several I was "deconditioned". It's absolutely true. Being sick has made exercise very difficult and I am deconditioned. It doesn't take long.

I also was very short of breath and may not have pushed myself as hard as I could.

[Gemma]

Hi kjay. Were you told to see neurologist to be evaluated for myopathy? My pulmonologist suggested that.

[dkd]

Yes, I had blood tests: acetylcholine receptor binding antibody, anti striated muscle antibody, and a creatine kinase. All normal/negative.

Are you going to get it checked out? I was referred to a different neuro and he just did the regular neuro eval (checked reflexes, had me push/pull against his hands, checked my eyes) and said that he didn't think I had anything neuromuscular. I think he should have done more. If you go, let us know how it went and what they check you for.

[Gemma]

Hi I went yestartday to see neuro doc. He gave me a referral for blood work, basically same as you had done. He kinda pushed for EMG test, but I said lets do blood work first. I don't really want to do EMG, its painful and I don't want them sticking needles into me.

[Chaos]

I had this done but it was part of a 2 day cardio pulmonary stress test to identify ME/CFS. One of the things they have identified in that condition is the fact that people aren't able to utilize O2 appropriately in their muscles. They frequently have an O2/CO2 disturbance on these tests. They are still trying to figure out why it happens. It's now been shown consistently to happen at several different facilities in several different studies so they feel that it is reliable data that they are looking at.

If you only have 1 test done it will usually come back looking like you are "deconditioned" on the first day. It's on the second day when the really interesting findings show up.

Here is a link to the website for one of the groups who has done most of the research in this area. There are a number of video and research articles that you might find interesting at the bottom of the page.

http://www.workwellfoundation.org/research-and-latest-news/

Here is a link to some notes from a presentation by Betsy Keller, Professor from Ithica College in NY who has also done research in this area as well as a few other presentations on exercise related problems associated with the condition which these studies have identified.

http://phoenixrising.me/archives/24522

In one study published in PT Journal last summer, they were able to correctly identify with 95% accuracy those patients with ME/CFS vs controls by exercise testing.

A researcher (Julia Newton) in Newcastle, England has been able to show that these same problems occur in the ME/CFS patients' muscles even when they are removed from the body and "exercised" in a lab setting. She is also showing step-by-step how these problems are tied in to the autonomic nervous system dysfunction that occurs in these patients. Her research is really interesting to follow especially for those of us with POTS/OI/NMH etc.

[Gemma]

Wow thats interesting. I only had one test done. My pulmonologist send me for that test just because I asked him and told him of my shortness of breath when I exert myself. So, could these results mean it could be ME/CFS?

[Gemma]

I was just watching the video. Did you have a two day test? And were they able to diagnose you with CFS? I dont know where to go with these results now. The pulmonologist that ordered the test called me and said that my cardio and pulmonary system is fine and I am just deconditioned or have myastenia gravis and should see neurologist. Neurologist wants to do EMG. Nobody is suggesting the CFS. Who should I see for this. Would it be my cardiologist, should he know about this test?

Thanks.

[xRobin]

Wow thats interesting. I only had one test done. My pulmonologist send me for that test just because I asked him and told him of my shortness of breath when I exert myself. So, could these results mean it could be ME/CFS?

Two day CPET testing for ME/CFS is really in the research phase right now; most clinicians will probably have not heard of it. Though you can get it done at Workwell and I think another lab.

Right now ME/CFS is diagnosed your medical history and diagnostic criteria. Though shortness of breath isn't unheard of it's not a typical symptom. You need to have disabling fatigue and post-exertional malaise (that means symptoms following exertion such as fatigue and flu like symptoms that can last days.) I would say that if you didn't feel inordinately exhausted after your test such as take to your bad for a few days it's an unlikely diagnosis. That's the reason they do two day testing - they want to trigger symptoms so they can measure patients while they are symptomatic.

It's really great that your heart and lungs are fine. From what I understand shortness of breath is pretty common with POTS, but it wouldn't hurt to pursue the other diagnoses if you're concerned. I've had EMG testing done and it wasn't too bad.

[Chaos]

Gemma- Here is a link to the Canadian Consensus Criteria for diagnosing ME/CFS. These seem to be the preferred criteria at the moment as to how it should be identified.

http://www.cfids-cab.org/MESA/ccpccd.pdf

On page 11 of this document you'll see the chart that gives you the criteria.

If in fact you meet the criteria then you probably will want to start doing some more research on the disease and perhaps look into seeing an ME/CFS specialist. While the test that you had run is very common, finding someone who understands the significance of it as it relates to ME/CFS and interpreting it, let alone having a second day test run is almost impossible unless you go where they know what they're doing.

I think there is definitely a sub-group of ME/CFS patients (and POTS patients) who have shortness of breath and air hunger as a symptom. I think that's why Dr. Stewart and Dr. Newton are both looking so much at O2 and CO2 levels, hypocapnia and hypercapnia etc. It's tied in somehow for some of us. It relates to hyperventilation in some of us too, but not because we're hyperventilating in response to anxiety etc, but because of some physiological trigger that's causing it to happen.

Here is another link to a video that might also be helpful for you to watch.

http://www.youtube.com/watch?v=q_cnva7zyKM#t=2022

While the 2 day testing is to some degree still at the research stage, it's well enough established that it's being accepted for disability and SSDI claims.

I had the two day test because I needed to see for myself, on paper, that what I was experiencing in my body with exercise was really happening physiologically. Being a PT, what was happening contradicted absolutely everything I had learned and observed in 28+ years as a therapist. Unless I saw it on paper there was no way I was going to be able to accept what my body was telling me because it just seemed way too crazy. It also helped tremendously to have it documented for my disability claim.