MIP MEP - MVV - possibly close to diagnosis

Status
Not open for further replies.

SulleyAnneC

Member
Joined
May 19, 2021
Messages
14
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Hi all. My previous post: Hoarse Voice and reduced MVV (50%) is not opened for replies.
I wanted to give an update on my situation, and ask for advice. Your honest opinion. So as I said I was scheduled for a neurological visit in september, but I got scared and canceled it, now it's rescheduled, and I have it in a few days. I know it's childish but I got really scared.
I don't know I thought I might just "shake it off" and not think about it anymore.
But I got weaker.

In the meantime I went on and had a new spirometry, as my doctor requested, and I'm honestly scared by the results.

MVV was 50% in august and its 62% now. MIP and MEP values are very very low. I repeated the test twice, then stopped for a little rest, and then twice again. Doctor supervised my execution and said everything looked like it was being done correctly, but could not believe these results. (attached)

MIP is 34 (49%) - MEP 0 (0%)

I tried again on another machine, same. I was very dizzy at this point and I can say I tried my best. Those reported are my best results.

Pulmonologist said it's very likely a neuromuscular symptom, advised me to see a neurologist soon. I went numb.

Every symptom I have is consistent with ALS. I can't breathe fully and I'm always tired. I have cramping, very hoarse and strained voice. Sometimes excessive saliva when talking, and need to take pauses in between my speech. My voice has a nasal quality to it that people start to notice too. I have clinical weakness in both arms (but then again, I still have a cervical hernia), and an EMG that did not come back clean, a few months back. Muscles look flaccid (but hey I don't exercise) and I have a small dent in both shoulders (doctor saw it and said probably hernia).

I can swallow correctly (fluids and solid food), I don't choke, but I notice that I eat slower. Like it takes more time to finish that same sandwich. I wondered if I was maybe depressed or something, but honestly I am hungry, I just chew slowly.

I know with those MIP and MEP values it doesnt look good. I was just wondering if this might be something else. Ever since I lost my dad to ALS I have been obsessed and health-anxious, but I never fully believed it could be it, at least let's say I hoped it was stress and trauma and other causes, but my whole house of cards collapsed during this last visit. I am genuinely worried.

I can't express enough how glad I am to be able to post here and how much I appreciate your informative and educated feedback. Thank you for this forum that has been a confort and a source of information for me so far
 

Attachments

  • CamScanner 11-17-2021 22.23.pdf
    339.3 KB · Views: 54
  • CamScanner 11-17-2021 22.25.pdf
    121.1 KB · Views: 47

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,804
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Prior threads here for folks to review what has been discussed:



 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,137
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
As someone with long COVID maybe a good discussion with a pulmonologist is indicated.
Let us know after you see a neuromuscular specialist, you need someone who can examine you which we can't. If you cancel appointments we really can't give any input either.
All the best.
 

SulleyAnneC

Member
Joined
May 19, 2021
Messages
14
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan

Affected,​

Thank you so much for your reply. I have an upcoming appointment with a neuromuscular specialist and I'm terrified.
What Im trying to do beforehand is to have an educated opinion, because appointments are usually very brief and I don't fully know or understand all terms so I often go home with a sense of "I should've asked that" or I have to look up things.
I'm trying to fully understand the importance of my spirometry and the other Pressure study I've done in order to ask the right questions and be able to understand what the hell is goin on with me.
I did not know about MIP and MEP before today when they offered me to run the test, but I understood it is very a very serious indicator of ALS or other neuromuscular diseases.

Is that correct? Or am I worrying for nothing?

As for the long-COVID, I am being taken care of at a very good clinic here, the long-haul symptoms (anosmia, etc.) have almost disappered and it's the general opinion among the doctors that Covid had its onset in an already existant situation in my case, making things worse (at least, confusing the picture), but not being the root cause of my symptoms.

Also, today Pulmonologist made it clear that this is a muscular problem and has nothing to do with the virus.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,053
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I do not believe your MEP is 0. If you could not expel CO2, you would be dead. MIP and MEP are not going to be severely abnormal and everything else normal. As before, these test results don't suggest ALS.

In your last thread, you were questioning a low MVV, which now seems to have improved, and now you are questioning two other questionable values. I can't judge the equipment and testing methods from afar, but would suggest new exams/tests at a different hospital. Everything from the mouthpiece used to how many attempts/how much rest/how variable your results are can affect the quality of MIP/MEP data, which is exactly why these tests are NOT used in isolation to diagnose anything. Whatever you read, you didn't read that they are. You acknowledge that you were dizzy, and well, in sum, these results aren't worth talking about.

Saying that all your symptoms are those of ALS is like saying headaches always signify brain tumors, or stomach aches food poisoning. And mild EMG abnormalities don't signify ALS, either.

More than ever, I think you need a good internist to parse these inconsistencies and get you the support you need. This forum is no substitute for that.

Best,
Laurie
 

SulleyAnneC

Member
Joined
May 19, 2021
Messages
14
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Thank you so much for your reply, Laurie!
The equipment was different this time (same doctor, different hospital) - he saw me in private practice first and then at the hospital becase he wanted to perform the stress test following a low MVV value last time.

The way he explained this to me, all the lung values are fine (the lungs "work" well at rest), but all the muscualr values are low. Not only the MIP-MEP are low, but the MVV (a small variation of 10%, but still unaccettable for my age/type), the FVC is also below the normal range, which makes sense.

I think I was dizzy because I put in all the effort. The first try was very bad, so he made me try again and again.
I have the neuro visit again tomorrow, is there something I should ask?
thank you again
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,053
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
The MIP/MEP/MVV are not the only pulmonary values that relate to muscles (you use muscles whenever you breathe, even at rest), so I wouldn't stress over that comment.

As with any specialty visit, I would just ask what diagnoses are still on the table, and what will be done to rule them out. But I would also be prepared to hear that (setting the spurious tests aside), there is no evidence of neuromuscular disease from the neurologist's perspective.
 
Status
Not open for further replies.
Top