OK, so I was in the hospital six days. Respiratory practitioners came three times a day to test my breathing (Pulmonary Function Tests?). I think this is because I listed "occasional shortness of breath" as one of my symptoms.

I saw many different practioners, but each one expressed surprise at how high my numbers were. They even caught me during a weak spell when I felt short of breath, and said the same thing. I don't know what the numbers were, but I heard several times, "Wow, I couldn't get numbers that high!"

So, this is good news. But I wonder why I felt short of breath if my lungs are that strong. Could it be just that I was anxious about my weakness? (I was! It was scary.) Or are there breathing problems that wouldn't show up on these standard PFTs? I did two: one that involved exhaling as hard as I could, and the other inhaling.

The shortness of breath is a very minor, passing symptom that I only get occasionally. Funny how the minor symptoms get the attention. No one was alarmed that I was too weak to hold my upper body upright, but I got admitted because I mentioned that I often choke on my coffee. "Trouble swallowing," like Alice said once, seems to be the symptom that gets attention.

Abby

Abby, I know someone here will have more info about specifics but wanted to say I got a copy of the bedside PFTs when I had the admition by the at that time neuro for suspected MG crisis. I thought wow they should get it as the number before and after I was started on mestinon where day and nite. I literally have carried this data around to new docs, neuros. The local neuro I went to as the student in hosp said you must have someone in CR, my city, incase you crisis again. When i pressed this data into this guys hands towards end of that appointment he said sorry I cant understand these tests I am a neuro. Had said he saw only some weakness in arm like MG and suggested I go to St Louis where his teacher was. At that time I was going to appointments rested and full of mestinon.

I respected him for admitting neuros dont have much understanding of breathing tests. I have always gotten the biggest support from my pulmos generally. The one at Mayo turned the tide so I started to get treated at all again in Summer 09! My current neuro is the only one who currently fights for more testing to be done so he does other tests when I see him to try to prove the point like last time a swallow test. He tho recommended a swallow test and a tensilon test before I saw this last neuro. Neither was ordered.

Anyone with breathing issues I sure recommend a good, caring pulmo who can put you in a lab where computerized breathing tests are done. Its hard data which a doc loves but it has to be a doc that can understand them.

I trust having a good pulmo for the next time I crisis than any neuro currently in my area.

Annie59

I don't know what tests they did. but some tests are not very sensitive, and may be normal even with significant respiratory muscle weakness, if you have good lungs.

In order to fully assess your respiratory muscles you need to have a few tests- MIP, MEP, and MVV as a minimum. And those have to be done more then once.

I doubt that your respiratory symptoms are only due to anxiety, and I would put it very low on the list, until proper respiratory evaluation is done.

symptoms like breathing and swallowing are treated more seriously, because they can potentially endanger your life. other symptoms even if more bothersome, can be treated less emergent.

a mild degree of respiratory muscle weakness does not endanger your life, but most neurologists don't know how to assess respiratory symptoms or their severity.

you will learn with time, how to assess the severity of your own symptoms. when it is enough to just rest some more, and when more significant actions are required.

I think it is also a good idea to have a good pulmonologist ( preferably one with a good understanding of neuromuscular diseases) involved in your care.
He/she will be able to evaluate if you have any significant respiratory muscle weakness, and can also help you learn how to monitor it yourself.

What they did for you was bedside spirometry. As Alice said, it is not as accurate as full PFT's. What people tend to do is to blow as hard as they possibly can. If you have MG, that might show a "false" normal. MG gets worse with repetitive activity. If you did a MIP, for example, five times, chances are that the numbers would keep going down.

MG is not a static illness. It can't be accurately measured with a "static" test. The tests have to show what your muscles are like "in action."

Did they do an arterial blood gas? Probably not since they declared your breathing was okay.

I'm glad you got some help. Please don't chalk what you were feeling while breathing up to anxiety. You don't come across as someone who is anxious. Think about it.


Annie

Annie,

That makes sense. The strength of any of my muscles seems normal if they ask me to push once. The weakness shows up with sustained pushing. Of my three neuros, only one tested me like this (the one who diagnosed me). After about half a minute of sustained pushing with my hand, I felt my arm muscles simply let go. The OT at the hospital had me lean to the side slightly while sitting, and the same thing happened--I could sustain it for a while, and then the muscle just gave up and quit responding.

That's very encouraging to me, because I know that's what is meant by "fatiguable weakness" and that it's the hallmark of MG. It helps me to be more confident in my diagnosis.

I'm not an anxious person, but when that intense weakness comes over me, I tend to feel panicky.

No arterial blood gas, I don't think--just the little finger clip they use for vital signs.

Thanks. I think my neuro is finally going to prescribe Imuran for me next week. If the IVIG helps, I might need one more session or so of it before the Imuran (I hope) starts kicking in.

This has been a long road since my first symptoms (but not anything like as long as some people's! I really am astounded at the stories I read here). I am pretty tired of plugging away. But I am making progress.

Abby

The test I was referring to that showed the big change after they put on Mestinon in hosp after a few hours of machines monitoring and this test was NIF or negative inspiratory force test. This particular test is done by a respiratory therapy person at bedside. It is a small handheld unit that is less accurate. There is another test with this at bedside but this one showed this big change. For me the one where I have to suck air in is the hardest/kinda scary as nothing happens. My muscles cant at this point push against the 'wall' in the tube that is created. When I get new people they at times reexplain the test even more than once thinking I dont get what I am supposed to be doing. Unfortunately the bedside test can be subjectively hurt in this way as on the their form they put down their thoughts on whether you gave your best effort. Out of several people people over 2 days I only had one that said they werent sure about my effort.

Here is a piece on the more accurate pulm testing if you care to look:
http://emedicine.medscape.com/article/303239-overview
This article uses the term Restrictive lung disease. I was diagnosed with when I saw my first pulmo in 2005.

Annie59

Annie,

I briefly went over your link.

This was clearly written by someone who has no understanding of MG.

The following sentence shows where many errors in understanding PFTs of MG patients come from-

So, you have a patient in which the VC significantly drops after a few efforts. what do you do? you let the patient rest, and then repeat it again.
This is exactly how you are going to miss significant respiratory muscle involvement of myasthenia!

Further more, even in patients with lung diseases or asthma, there are studies that show an element of respiratory muscle involvement, so their low results may also be real, and explain why it is so common.

In medicine, you can't carve order by leaving the disorderly parts out. This is a fertile source for serious clinical errors.

Alice, can we discuss this further? I dont know what the last sentence means in your response. I am so glad you posted about this. It makes absolute sense about the stopping to rest and I HAVE been told to do that so I can make ti turn out better as that is what they want! They want me to keep improving after the first one. To me that never made sense as I generally go down hill after the first. I have just gotten used to that except for one tech who was the first one to say this looks like MG, they dont know the disease and they have one goal. Many times I put the machines into red flags because I just cant even register the right number that make sense so the computer says that 'it cant compute'! I so wish I had the money to go back to nice Pulmo I had at Mayo who found I had the paralysis in my diaphgram.



Annie59

What I meant by my last sentence is that many times there is "noise" in medicine, and in test results and our first inclination is to ignore that noise. But, sometimes that noise has meaning, and may be a clue to better understand.

We need to know when rapid changes in test results is because there are rapid changes in what we are measuring or because our tests or equipment are inaccurate. We can't assume that something is stable or reproducible when it is not.

A significant problem with evaluation of some patients with myasthenia is that they have rapid changes of what is usually relatively stable.

I hope this makes it more clear,

alice