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Tippenme

New member
Joined
Jun 20, 2018
Messages
4
Reason
PALS
Diagnosis
06/2018
Country
US
State
OR
City
Portland
Hello to all: I am a newbie and was diagnosed after a year of symptoms in June of 2018 at OHSU here in Portland. (I had previously gone to Mayo in Rochester and was badly misdiagnosed...a story for another time perhaps.) I have been reading through the forums and am truly blown away by the compassion and support contained in these threads and feel so fortunate to have found this incredible resource. I have a very supportive family--husband of 28 years and kids aged 20 and 18. I currently use a rollator to get around and use a manual wheelchair for longer distances. My neurologist doesn't have me checking in with the ALS clinic until September but did want me to go to the respiratory lab ASAP. I went yesterday but have no idea how to interpret the results. Any feedback would be greatly appreciated! Thanks in advance for any and all help!
 

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Hello fellow Oregonian. Sorry to have to welcome you here. You’ve found a great site for support and help.

Your respiratory numbers look great except for a reduction in mid expiratory pressure (MEP). Given that your other numbers are so good, if you’re not having noticeable difficulty exhaling, I’m not sure this is a problem for now. Others here may chime in.....

Has your doctor reviewed the numbers with you?

What decreases in muscle function have you noticed with your ALS so far?
 
All your numbers are excellent except MEP. That number measures the strength of your breathing muscles as you breathe out. That's the part of the test where you bear down hard and force air out against pressure. Patient effort is a big factor in both MIP and MEP. I'm wondering if they did it multiple times as your other numbers are all very good. Did they do an arterial blood gas to see what your C02 looks like as that might be impacted by a low MEP?

The other thing I noted was that your FVC didn't change much from standing to sitting to lying down. That's a good thing.

If this is your first test, it will be used as a base for future comparison.
 
Not knowing your age/gender (you mention a husband, but I don't want to presume, though if you are female, predicted MEP is distinctly lower), I can't provide your exact reference range, but can assure you that "predicted" MEP is likely too large. Thus, the 55% is wrong. To give an idea, 40+ is considered enough to clear secretions, and 80 has been used as a rough cut of "low normal" across the board. Yours is 82.

Best,
Laurie
 
Laurie: I am a 53-year-old female. I really appreciate the context you provided me for the MEP--I was concerned with the low value, especially since it stood out from the rest of the scores. Thank you for sharing your knowledge.
 
Karen: Doctor has not reviewed numbers with me and likely won't until September. The ALS for me started with a limp/foot drop in my left leg. Both legs now have spasticity/weakness. I'm beginning to feel some stiffness in my arms and don't believe I'm having any bulbar symptoms as of yet. This forum has been a godsend and I've already learned a great deal...with lots more to learn. Thanks for your quick reply!
 
So using this equation set (there are a lot of equations, most from older equipment; this is a composite one), where the L column is male, R female, your "low normal" MEP as a 53F would be 65, as an example. So 82 is looking pretty good! And your MIP of 76 vs. a LLN of 36 looks good, too.

MIP LLN: 62 – (0.15 x age) 62 – (0.50 x age)
MEP LLN: 117 – (0.83 x age) 95 – (0.57 x age)

Important note: "predicted" on your printout is more the middle of the road, not the lower end as the LLN is. That is why your "predicted values" are higher than what I just typed. But -- that predicted MEP is just wacky.

A flanged mouthpiece is recommended for people with neuromuscular diseases such as ALS. As an aside that may apply to some people, greater weight can increase both MIP and MEP.

People can use different equations for the reference ranges, but there's no equation I saw that suggests the MEP shown on your printout, so like I said before, I'd consider that an error in programming.
 
Good catch, Laurie. I wasn't looking at the absolute numbers. Here is the chart I go by for home use.
 

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This is so helpful--thank you Laurie!
 
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